Managing and Treating Myalgic Encephalomyelitis

 

Introduction

Upon receiving a confirmed diagnosis of Myalgic Encephalomyelitis, managing symptoms and other ME related issues requires a multi-step approach.  

 

To understand the process of getting a diagnosis see our post on Diagnosing ME 

 

Or 

 

For a simple confirmation of a suspected diagnosis please see the following online tool, and/or the research-backed DSQ-Screen for detailed symptom assessment and the DSQ-PEM-2 Screen for detailed post exertion response assessment, helping you see if your symptoms align with the diagnostic criteria for an ME diagnosis. 

 

These tools help to organise your illness experiences (PENE/PEM), cognitive issues, sleep problems, pain, autonomic dysfunction, according to established criteria like the International Consensus Criteria (ICC, 2011), and help you to see if you meet the required core symptoms and other systemic impairmenyts needed for an ME diagnosis.

 

 

There is currently no cure for Myalgic Encephalomyelitis (ME), and there are no universal treatments available. However, there are some strategies that healthcare professionals and patients can use to manage symptoms and symptom severities. 

 

 

First Do No Harm  
Or in the case of ME patients
Do as little harm as possible while trying to help an individual improve quality of life

Early management following illness onset may reduce the risk of further disability and the patient's condition deteriorating.

Initial Self-Management in ME: Key Early Measures

The single most important factor influencing recovery or remission in ME is appropriate rest in the early stages of the illness. The importance of avoiding overexertion in ME cannot be overstated. 

 

•  Overexertion can cause lasting harm in ME, not just temporary exhaustion.
•  Early rest helps prevent the illness from becoming more severe. 
•  Pacing and energy management allow the body to avoid further stress and reduce symptom escalation.

 

The ME Care Gap: What Patients, Carers, and GPs Need to Know

 

There are many things that an individual with ME is up against when seeking appropriate care for their challenging symptoms ....  

 

  

Fully understanding the multisystemic symptoms and complexities of ME requires specialist training. Unfortunately, the shortage of experts often leaves general practitioners (GPs) to fill this gap, as they are usually the first point of contact for patients. 

 

Access to an ME-informed consultant or specialist remains severely limited due to the scarcity of expertise and the absence of dedicated training pathways. 

 

Because accessing the very small number of clinicians with ME expertise and interest can take several months or longer, it is essential that GPs draw on established expert resources to begin appropriate management as early as possible. Early intervention can help improve quality of life and may prevent further deterioration in illness severity. 

 

At present, there are no official HSE guidelines for Myalgic Encephalomyelitis (ME). A National ME Clinical Guideline is currently in development. 

 

As the lack of training, limited expertise, and near-impossible access to ME-knowledgeable specialists continue to pose barriers, we have taken steps to bridge this gap by compiling and publishing information to support ME patients and their carers.  

Management Strategies outlined below are mostly suitable for people with mild and moderate ME, and some people with Severe ME. Not all the information will be suitable for those with Severe, Very Severe and Profound ME and there may be times where fluctating illness severity sees a patient in any severity category unable to use some of the management strategies outlined. 

  

 

 

  

Important Guidance 

 

  - ME exists on a spectrum of severity

 

People with ME can be:

• Mild
• Moderate
• Severe
• Very Severe
• Profound 

The functional abilities and tolerances of these groups are very different.

 

 - Strategies that are tolerable for mild or moderate ME may be unsafe or impossible for severe forms 

 

Many management approaches, such as pacing techniques, light activity adjustments, cognitive strategies, or environmental modifications, require a minimum level of physical or cognitive capacity.

People with Severe, Very Severe, or Profound ME:

• may be bedbound
• may have extreme sensory sensitivities
• may be unable to tolerate touch, light, sound, or even basic movement
• may have very limited energy envelopes

Therefore, strategies designed for mild/moderate ME may overexert them and worsen symptoms.

 

 - ME symptoms fluctuate over time

Even within the same severity category, symptoms can change day-to-day or week-to-week.

This means that:

• A strategy that works today may be impossible tomorrow.

• A mild or moderate patient may temporarily be in a 'severe' state due to post-exertional malaise (PEM) or relapse.

• It’s unsafe to assume any management plan stays suitable all the time.

 

The above guidance is written to prevent harm

The aim should be to protect patients by acknowledging:

• Not everyone can use all strategies.

• Patients with higher-severity ME must be especially cautious.

• Management must be individualized and flexible.

Please see a link to our webpages re Managing Severe ME at the bottom of this page.

About the atypical Post Exertion Response in ME (PENE/PEM) 

It is important to know about and understand the cardinal symptom in ME to know about the significance of some management strategies described in the information further below. 

Post Exertional Neuro-Immune Exhaustion - PENE - the cardinal feature in Myalgic Encephalomyelitis (ME), is the distinguishing feature of the disease as per the International Consensus Criteria and Primer (also referred to as PEM or PESE or PER by others). PENE is explained in Section A in Table 1. of the ICC 

People with ME have an impaired ability to produce, use, and recover energy at the cellular and systemic levels. When someone with ME pushes beyond their reduced energy capacity, even by a small amount, the body cannot respond normally. Instead of recovering with rest like a healthy person would, exertion triggers PENE, also referred to as post-exertional malaise (PEM): a worsening of symptoms that can be delayed, severe, and long-lasting.

In the early stages of the illness, the body is especially vulnerable. Continued overexertion during this period can repeatedly trigger PENE, which in turn can lead to lasting deterioration in function. Many patients who become long-term or severely ill report that their condition worsened because they tried to “push through” the illness early on, often before they knew what was happening.

Conversely, adequate early rest gives the body a chance to stabilise. By keeping physical, cognitive, and sensory exertion within a tolerable range, patients reduce the frequency and severity of PENE episodes. This protective approach helps prevent further injury to already compromised systems, preserving function and increasing the chance of partial improvement, stability, or remission.

Features of PENE include:

• Immediate onset: symptom exacerbation may occur especially for people with Severe ME

• Delayed onset: symptom exacerbation may occur 24 to 48 hours after exertion

• Variable and an often prolonged period of recovery to baseline illness severity and symptoms.

Patients and carers may use language such as 'crash', 'setback', 'relapse', 'payback', and other words to describe post exertion response.

In ME there is a physical inability to produce sufficient energy on demand, so PENE can lead to cognitive and muscle dysfunction to the point of paralysis and loss of speech, particularly in individuals with severe ME.

 

PENE can also exacerbate the immune dysfunction leading to reactivation of viral and bacterial infections. These reactions can be serious enough to require emergency medical care.

ME has one of the lowest scores for quality of life compared to many diseases. 

Avoiding PENE can significantly help an individual to improve their health quality, but avoiding all the things that cause PENE is difficult and can lead to complete isolation. 

Friends and family need to be supportive in order for patients to avoid PENE as much as possible while still maintaining familial and community ties.

PENE limits the ability to be mentally and physically active so it often leads to work disability. Once someone suspects an ME diagnosis due to PENE and other criterial symptoms, it is advisable to stop work and and activity to avoid worsening. Living within the limited energy production window as early in the disease as possible leads to a best long-term outcome.

People with ME must reduce and adapt their activities to conserve energy and avoid onset of PENE. This includes all types of activity including physical, cognitive, social, emotional and stress activity, and takes into account overall level of activity.

Management consists of teaching patients to stay within their energy limits to avoid triggering a post exertional response.

Pacing and resting throughout the day can help manage symptoms and prevent deterioration.

Avoiding PENE

There are some strategies healthcare professionals can suggest to people with ME to avoid PENE and to manage other symptoms and features including: 

• activity management strategies such as pacing* and resting* 

• symptom management to reduce symptom burden & increase QOL 

• validation and reassurance that the patient's symptoms are due to a biological issue across various body systems 

• help accessing supports such as Community Services & Welfare payments 

* Important Note Re Pacing and Resting

People with Severe ME spend days struggling to cope from moment to moment in the most awful suffering. For those, and others with ME, pacing and indeed resting may not be an option to manage ME because the body can be in such turmoil that patients can't pace enough to impact disease processes, for example, someone who has severe/very severe or profound ME who lies completely still because any movement at all can cause awful debilitating symptoms. 

For those patients no amount of pacing can help if digesting food requires more energy than the body can produce; no amount of pacing can help when trying to keep warm; no amount of pacing can help when the person has multiple sensitivities and is already responding negatively to light or sound or movement.

Causes of PENE 

 

Physical over-exertion

Mental over-exertion
Emotional over-exertion
Sleep dysregulation
Unbalanced/poor diet and nutrition
Other medical issues

Ways to avoid PENE 

 

Pace yourself
Stay within your energy envelope
Build your support community e.g., family, carers, doctors, specialists
Ensure good nutrition
Ensure appropriate sleep
Maintain emotional health
Avoid stress
Treat other medical conditions

The above listed strategies are all highlighted below within the more detailed information and resources for managing and treating ME.

There are a few ways to prevent PENE and to manage your symptoms. There is no single way of managing ME that works for everyone, and it takes time to figure out what works best for you. There are several treatment and management options. Early diagnosis, taking medication to control certain symptoms, and making lifestyle changes can all help.

Resources for Managing & Treating ME

• International Consensus Primer  

• Strategies for Managing Myalgic Encephalomyelitis (ME) 

• Questionnaires for Continual Assessment and Tracking Symptoms, Severities & Impact - De Paul Questionnaires

• Film about ME 

• Important Patient Documents To Consider 

• Creating an ME Accessible Healthcare Setting 

• Information Sheets 

• Physio Care - How to work safely with people who have ME

 - International Consensus Primer (IC Primer)

“PENE is characterized by a pathological low threshold of physical and mental 

fatigability, exhaustion, pain, and an abnormal exacerbation of symptoms in 

response to exertion.” International Consensus Primer (ICPrimer), 2012

 

A Personalized Management & Treatment section within the IC Primer begins on page 13.  Subsections include:

• Goals
• Guidelines
• Medication Principles and Caveats
• Revise Life-Style: Patient Self-Help Strategies
• Education and Personal Development
• Maximizing Sleep
• Nutrition, Diet and Hydration
• Energy Budget/Bank 

This Personalised Management & Treatment guide is suitable for collaborating with a medic to plan an individual's care. All health-care personnel can become sufficiently knowledgeable to manage ME following diagnosis by adopting and using the IC Primer for Medical Practitioners, see pages 13-19

 

 - Strategies for Managing Myalgic Encephalomyelitis (ME) 

• Early Diagnosis 

 

• Pacing (activity management) & Resting *See important note about Pacing 

 

• Energy Envelope Technique 

 

• Step By Step Symptom Management

• Medical Treatments (prescription & non-prescription meds)

• Other treatments and management strategies e.g., managing sleep & diet 

 

• Using a Heart Rate Monitor 

 

• Managing relapses and adrenaline surges ME 

 

• Other Resources

 

Early Diagnosis

Early Diagnosis is essential in ME.

The aim should be to provide people with an early and accurate diagnosis which will allow patients to receive appropriate care in a timely fashion, which may lessen the severity and impact. 

 

Early diagnosis should enable a comprehensive plan of management to be agreed between the patient and doctor which should cover symptom management and symptom relief, which may lessen the severity and impact. 

 

Developing an agreed plan of care appropriate to the individual should include the prevention of  inappropriate or harmful approaches taking place – e.g. attempting to ‘work through illness’ –  to reduce the risk of a more prolonged and severe illness occurring.

 

 

NB: The 6-month waiting period before diagnosis is not required as per the ICC 2011.
 

 

 

Pacing

Pacing is an individualized approach to managing physical, cognitive, and emotional energy within a patient’s specific limits by carefully planning where and how to spend their available energy. It is a critical tool to prevent and/or reduce PENE/PEM.

 

Pushing through when already experiencing challenging symptoms is not advised for people with ME. Instead, pacing activities and resting are recommended. Pacing (or activity management) is an important self-management tool, a strategy designed to help people live within their energy envelope to minimise the post exertion worsening/deterioration.

Pacing is a therapeutic strategy for managing exertion to keep it within the patient's energy threshold. When someone is pacing, they are undertaking less activity than they have energy for. 

 

Pacing focuses on identifying the patient's symptoms and level of functioning, analyzing activities and providing modification and adapations. The goal of pacing is to limit cycles of symptom exacerbation and prioritise tasks.

Pacing can help to improve quality of life and reduce symptoms. 

Pacing can also involves keeping periods of activity short, with rest breaks in between.

For example, instead of taking a shower, brushing your teeth, and getting dressed in one go, pacing would mean you take a shower, and then rest, until you feel ready to undertake the next activity.

Pacing aims to leave some ‘fuel in the tank’ at the end of the activity. Do no more than 50–60% of what you feel you can do to prevent relapse even if you feel like doing more.

Pacing, like any other skill, must be practised until it becomes easier. Most people can expect to experience setbacks from time to time until they figure out a pattern, so it is important to be realistic about what you can achieve. The first step is becoming familiar with your energy limit. This will help you to identify when you are experiencing post exertional worsening. It may help you to keep a diary.

Prioritize your activities and delay, delegate or eliminate non-essential items.

Reduce or modify your activity levels until you find a level that does not trigger PENE.

Ensuring rest periods between activities are crucial.

 

* Important Note:

 

 

People with Severe ME spend days struggling to cope from moment to moment in the most awful suffering. For those, and others with ME, pacing may not be an option to manage ME because the body can be in such turmoil that patients can't pace enough to impact disease processes, for example, someone who has severe/very severe or profound ME who lies completely still because any movement at all can cause awful debilitating symptoms. 

For those patients no amount of pacing can help if digesting food requires more energy than the body can produce; no amount of pacing can help when trying to keep warm; no amount of pacing can help when the person has multiple sensitivities and is already responding negatively to light or sound or movement.

 

More about Pacing in Dialogues for a Neglected Illness Film about Pacing here.

 

More on Pacing from The Nightingale Research (now called the Nightingale Continuum) here

“Pacing saved my life, I timed everything, and I put away everything distracting and energy-consuming out of reach (e.g., smartphone, iPad, books, magazines etc). But often I had days when I had extremely strong and overwhelming urges to do more than I should, another patient describes it as having never-ending adrenaline rushes, which is even worse than what I had, and on these days discipline wasn’t enough - I couldn’t rest even though I needed it. The only thing that worked for me to prevent myself overdoing it on these days was a drug called Olanzapine. I credit it among other supports with saving my life. Olanzapine calms me down and usually puts me into a deep state of rest or sleep for an hour or two therefore preventing me from overdoing it. I only take it on the days I have those strong urges and I can see I'm reaching my limit. Unfortunately Olanzapine doesn’t work for everyone” ~ Severe ME Patient

 

 

 

 

 

 

Energy Envelope

The energy envelope technique for managing and preventing symptoms is a way of describing the amount of energy a person with ME has available each day and how they best use that energy supply. 

 

'Energy Envelope energy' is the energy that you can safely use without triggering relapse. How much energy you have will depend on how badly ME affects you. It can also change from day to day, which means that an activity that you managed yesterday may exhaust you today. People with ME need to find their own energy envelope – to find their individual limits for mental and physical activity. Then they need to plan activity and rest to stay within these limits. Some patients refer to staying within these limits as staying within the “energy envelope.”

To use the idea of the energy envelope, think of your situation as having three elements. The first is your available energy. This is the energy you have to do things. It is limited and recoverable by rest and nutrition.

The second is your expended energy, the energy you lose through physical, mental, and emotional activity.

The third is your symptoms - PENE, pain, cognitive issues, sleep issues etc. So, if you expend more energy than you have available, you will intensify your symptoms. This is called living outside the energy envelope. 

 

The importance of living within the envelope can’t be stressed enough.

NB When having a good day, it is tempting to increase activity beyond what you would normally attempt but this can then lead to a crash so try to avoid overdoing things when you are feeling better.

There are other similar strategies e.g., the Spoon Theory and the Bowl of Marbles Theory.

 

 

  

Step by Step Symptom Management

 

Myalgic Encephalomyelitis is a complex, multi-system condition that affects energy production, the nervous system, immune function, and the body’s ability to recover from even small physical or cognitive effort. Because it varies so widely between individuals and currently has no cure, one of the most effective and practical ways to improve quality of life is systematic symptom management. 

 

Individuals have different clusters of symptoms. This can be overwhelming for both the clinician and patient to work through. However, by taking a structured, targeted, step by step approach, healthcare professionals can work with the patient to rank their symptoms and address them one at a time, starting with the most debilitating/disruptive. This can be done using the De Paul Symptom and Severity questionnaire linked  

 

Although there are no universally approved treatments for the underlying cause of ME, medication may help alleviate some symptoms (e.g. pain, orthostatic intolerance, insomnia, digestive issues, sleep problems, headaches, and more). 

ME patients are typically sensitive to pharmaceuticals, so it is advisable to start on low doses and titrate up slowly. Certain medications may suit some patients but may not suit others so it may be a case of trial and error, and trying something else. 

 

 Lets look at symptom management more closely....

 

ME Is Highly Individual, So Targeted Symptom Care Works Best 

 

People with ME experience different mixes of symptoms - post-exertional malaise (PEM), pain, sleep disturbances, orthostatic intolerance, cognitive issues (“brain fog”), and sensory sensitivities, among others. 

 

Symptom management allows people to:

• Address their particular set of symptoms

• Experiment with strategies that fit their body’s needs

• Build a personalised approach rather than relying on one-size-fits-all solutions 

Because no two patients have the same pattern of illness, individualized symptom-focused strategies often provide the most reliable improvement.

 

Managing Symptoms Helps Prevent Crashes and Post-Exertional Malaise 

 

PEM - the worsening of symptoms after even minor exertion, is the hallmark of ME.
By managing activity levels, pacing carefully, and treating other symptoms that can trigger PEM (such as pain, poor sleep, or orthostatic intolerance), individuals can often:

• Reduce the frequency and severity of crashes

• Stabilise their baseline

• Maintain more consistent energy

These improvements can make day-to-day living easier and help protect long-term functioning.

 

Symptom-Specific Treatments Can Meaningfully Improve Daily Life 

 

While no single treatment cures ME, many interventions target specific symptoms effectively. For example:

• Pain management (medications, gentle physiotherapy, heat therapy) can make movement and rest more tolerable.

• Sleep support - optimizing sleep hygiene or using certain medications may help improve restorative rest.

• Orthostatic intolerance treatments (increasing fluids/salt, compression garments, medications) can significantly reduce dizziness, nausea, and fatigue.

• Cognitive strategies can help with memory and concentration challenges.

Even small improvements in these areas often add up to noticeably better quality of life.

 

Symptom Management Supports the Body’s Limited Energy Supply 

 

ME is characterized by issues with cellular energy production. When energy use exceeds the body’s reduced capacity, symptoms can escalate sharply.

Symptom management helps individuals:

• Allocate energy more carefully

• Minimise unnecessary energy drains

• Create a more predictable and stable energy envelope

• Build routines that reduce stress on the autonomic and immune systems

This approach respects the physiological reality of the illness rather than pushing the body into harmful overexertion.

 

It Offers Hope, Control, and a Path to Better Stability 

 

Living with ME can feel unpredictable and isolating. Symptom-focused management gives people tools that provide:

• A sense of control

• Measurable improvements, even when small

• A structured way to understand their body’s limits and responses

• Greater confidence in daily decision-making

Over time, many individuals find that careful symptom management leads to a more stable baseline, fewer setbacks, and a better overall quality of life.

 

Medical Treatments

Treating ME is all about treating and managing certain symptoms. There is no specific medication for treating ME, but medication can be used to relieve some of the symptoms, e.g., pain. Your treatment will be tailored to your individual symptoms.

You can work with your doctor or specialist to organise a treatment plan tailored to your symptoms. Patients, and healthcare providers need to work together to decide which symptom causes the most problems. These should be treated first.

 

 

Pain 

 

Pain is a common symptom in ME.  There is a list of ways that might help with the following pain conditions.  We also include a list collated from patient feedback 

 

• Headaches: e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches.

 

• Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is noninflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain myofascial or radiating pain.

 

Methods to combat these symptoms include:

(i) Non-pharmaceutical:

• practise pacing
• avoid PENE/PEM
• avoid pain triggers
• avoid activities that worsen pain
• use localised heat or cold (heat & cold pads, hot water bottle)
• gentle stretching & movement therapies
• toning Exercise
• gentle Massage
• Physiotherapy (see Physios for ME One-sheet for advice)
• myofascial release
• relaxation therapies
• meditation
• TENS machine therapy (electric nerve stimulation)
• acupuncture
• hydrotherapy 

(ii) Pharmaceutical:

• anti-inflammatory/degenerate/neuropathies
  • NSAIDs
  • ibuprofen
  • naproxen 

• COX-2 inhibitors
  • Celecoxib 

• anticonvulsants
  • Gabapentin
  • Pregabalin 

• TCA [tricyclic antidepressants] – low dose for short time
  • Amitriptyline
  • Nortriptyline
  • Doxepin 

• muscle relaxants
  • Baclofen
  • Cyclobenzaprine 

• migraines
  • Sumatriptan Succinate 

• narcotic/opiates: only if severe (requires rationale & documentation)

Your GP can prescribe stronger painkillers, although they should only be used on a short-term basis. You may be referred to a pain management clinic if you have long-term pain.

 

Resources

 

• See ME International's Suggestions of Pain Therapies from their Members here 
• Coping with Symptoms  from Facebook group, North Carolina/Ohio ME & FM Support group, offers tips on a variety of symptoms 

 

 

OI and POTS - ME is linked to insufficient heart function and autonomic dysfunction
 

One of the key parts of the nervous system that is affected by ME is known as autonomic nervous system (ANS). If this is not functioning correctly it is known as dysautonomia or ANS dysfunction in medical jargon. 

 

From control centres in the brain, the ANS sends out messages to the heart, blood vessels, bowel and bladder to basically either speed them up or slow them down through what are known as the sympathetic and parasympathetic nervous systems. 

 

In relation to the cardiovascular system, the ANS plays a very important role in altering heart rate and blood pressure when changes take place in posture from lying or sitting to standing.  

 

The ANS's role is to make sure that when we move from lying or sitting to standing, there are immediate compensatory mechanisms in place to ensure that on standing up there is still enough blood being pumped to the brain to maintain normal brain activity. 

 

When this vital neurological/cardiovascular control system becomes defective people have problems when standing up and/ or maintaining an upright posture. This is known as orthostatic intolerance (OI). It is common in ME. 

 

Unfortunately, many doctors are not aware of this very common and disabling symptom. So it is often badly managed, or not managed at all. 

 

Orthostatic Intolerance (OI)

Some people with ME might have symptoms of orthostatic intolerance that are triggered or made worse by standing or sitting upright. Those with Severe ME can suffer from this symptom and find sitting up or standing next to impossible. These symptoms can include dizziness and light headedness; changes in vision; weakness; feeling like your heart is beating too fast or too hard or skipping a beat.

For patients with these symptoms, it is important that your doctor checks your heart rate and blood pressure. You may be referred to see a specialist, like a cardiologist or neurologist. Long term use of prescription medication may be considered.

General recommendations for management of OI are to avoid prolonged standing, elevate your legs when sitting, use compression stockings, increase fluid, and salt intake and consider prescription medication if needed. 

 

Information sheet from North Carolina/Ohio ME & FM Support Group's via ME International re Cardiac issue management here.  

This sheet has specific information regarding cardiac issues seen in ME.  

Tracking charts can be found on pages 3 and 4. 

 

If the blood pressure falls too much during a change in posture from lying to standing this is known as orthostatic or postural hypotension.

Both conditions can cause dizziness, light-headedness, blurred vision, mental confusion, nausea and feeling faint, or even fainting. 

If the pulse rate rises excessively (ie more than 30 beats per minute (bpm) in adults within 10 minutes, or 40 bpm in adolescents - ages 12-19) when moving from lying to standing within 10 minutes of doing, without a sustained drop in blood pressure, is known as postural orthostatic tachycardia syndrome (POTS).

The ME Association (UK) has detailed information covering the physiology, diagnosis and management (drug and self-help) of aspects of OI Dysfunction 

 

General Information on orthostatic Intolerance and Treatment here

 

POTS, NMH, orthostatic hypotension, and cerebral hypoperfusion syndromes are subtypes of OI.

 

POTS  

 

Postural orthostatic tachycardia syndrome (POTS) is a condition which causes a very large increase in heart rate and fall in blood pressure when people change from lying down to standing up. The consequences of this can include weakness, muscle aches and pains, and substantial disability. 

 

A healthy individual usually has a slight increase in heart rate - by about 10-15 beats per minute within the first 10 minutes of standing. POTS which is a form of OI is defined by an excessive rise in heart rate on standing (typically ≥30 bpm in adults within 10 minutes; ≥40 bpm for ages 12–19).   

 

POTS is an abnormality in the regulation of heart rate; the heart itself is usually normal.

 

Postural orthostatic tachycardia syndrome (POTS) is a disorder that presents with positional tachycardia and a constellation of other symptoms; it is seen in some  people with ME. 

 

Since one of the key difficulties that ME patients face is standing, most especially standing still, without experiencing symptoms such as dizziness, altered vision, nausea, fatigue, etc., it has been speculated that a thorough assessment of autonomic function might be a way to identify a specific definable subset of patients, or might even be diagnostic if the underlying mechanisms could be understood. 

Multiple studies (Rowe et al., 2020; Campen/Visser/Rowe group; and others) show: 90% of ME patients have some form of OI, but only a subset show POTS or NMH on routine testing. This is because many ME patients have cerebral blood-flow abnormalities without large changes in BP or HR. 

 

OI/POTS can worsen core ME symptoms (profound exhaustion, cognitive dysfunction, post-exertional malaise) and treating OI/POTS can sometimes improve function and tolerance for activity.  

 

 

Simple Tests: 

 

• Active stand test (measure HR/BP lying then standing for up to 10 minutes)

or

• NASA 10-minute Lean Test (endorsed by ME clinics e.g. in US as an easy screen). 

The NASA Lean Test evaluates OI, but it evaluates autonomic subtypes of OI, not cerebral blood-flow OI. Many experts argue that OI, broadly defined, may be underdiagnosed when only traditional markers (HR or BP) are looked at, and that cerebral blood flow or stroke-volume measures may be more sensitive to detect OI in ME.

 

Simple way to assess OI (NASA Lean Test) 

 

 

Image from Bateman Horne Centre

(According to a patient/caregiver/advocate, "The problem with this [NASA Lean Test] is that about 60% of ME patients with OI who don't have POTS or NMH get the NASA Lean test done (at home or at providers) and are told they don't have OI - when they do.")

  

 

Formal Tests:  

 

 

Formal testing can include:

 

•  Head-up tilt table testing and continuous HR/BP monitoring

 

This involves lying on a table that can be tilted to an angle of 60 to 70 degrees in a quiet, dimly lit, temperature-controlled room. Blood pressure and heart rate are recorded in a continuous manner. After a period of 5 to 20 minutes of lying flat, the table is tilted head up. Although a diagnosis of PoTS should be made by an increase in heart rate of 30 bpm within the first 10 minutes, this upright position can last between 10 and 45 minutes. The patient will be asked how they are feeling during the test, so symptoms can be matched with heart rate and blood pressure.  The test will end if your blood pressure becomes too low, satisfactory results have been obtained, or the maximum time has elapsed.

 

Image from www.potsuk.org/about-pots/diagnosis/

•  Doppler test for Postural Orthostatic Tachycardia Syndrome (POTS)

A Doppler test typically refers to a Transcranial Doppler (TCD) ultrasound that is often performed in conjunction with a Head-Up Tilt Table Test or active standing test. This test measures the speed and direction of blood flow in the brain's arteries to help understand the cause of a patient's symptoms.
 

How the Doppler Test is Used for POTS 

 

In a TCD test for POTS, the ultrasound is used to assess cerebral blood flow velocity (CBFv) as the patient changes positions, usually from lying down to being tilted upright.  

 

Purpose: The test helps determine if symptoms like brain fog, dizziness, and light-headedness are caused by a drop in blood flow to the brain (cerebral hypoperfusion) when standing up. 

 

Mechanism: When an individual with POTS stands up, their body may struggle to maintain sufficient blood flow to the brain, even if their blood pressure remains stable. The TCD can detect this reduction in CBFv, which often correlates with the severity of the patient's symptoms. 

 

Procedure: A small, handheld probe (transducer) is placed on the skin at specific points on the head (e.g., temples, back of the neck) to monitor blood flow in the major cerebral arteries. This is a non-invasive, painless procedure. 

 

Diagnosis Aid: The findings from the TCD, combined with heart rate and blood pressure measurements during the tilt test, can strongly support a POTS diagnosis and help doctors understand the specific physiological mechanisms (e.g., severe venous pooling in the lower body, impaired cerebral autoregulation) contributing to the patient's condition.  

 

How the Doppler Test is Used for POTS

In a TCD test for POTS, the ultrasound is used to assess cerebral blood flow velocity (CBFv) as the patient changes positions, usually from lying down to being tilted upright. 

Purpose: The test helps determine if symptoms like brain fog, dizziness, and light-headedness are caused by a drop in blood flow to the brain (cerebral hypoperfusion) when standing up.

Mechanism: When an individual with POTS stands up, their body may struggle to maintain sufficient blood flow to the brain, even if their blood pressure remains stable. The TCD can detect this reduction in CBFv, which often correlates with the severity of the patient's symptoms.

Procedure: A small, handheld probe (transducer) is placed on the skin at specific points on the head (e.g., temples, back of the neck) to monitor blood flow in the major cerebral arteries. This is a non-invasive, painless procedure.

Diagnosis Aid: The findings from the TCD, combined with heart rate and blood pressure measurements during the tilt test, can strongly support a POTS diagnosis and help doctors understand the specific physiological mechanisms (e.g., severe venous pooling in the lower body, impaired cerebral autoregulation) contributing to the patient's condition.  

In summary, while the primary diagnostic criteria for POTS rely on changes in heart rate and blood pressure during orthostatic stress, the addition of a Doppler test (TCD) provides valuable information about blood flow to the brain, which can help tailor treatment strategies. 

 

 

You do not need Doppler to diagnose OI generally. OI is diagnosed by symptoms provoked by upright posture, with or without HR/BP abnormalities.  

However, Campen & Visser’s work shows that cerebral blood-flow reduction during orthostatic stress is extremely common in ME (both mild and severe cases) and is often not detected by BP/HR measurements alone. Therefore, Doppler or other cerebral blood-flow measurement is the gold standard for detecting the ME-specific pattern of OI. But it's not the only way to diagnose broader OI.

Studies by Visser, van Campen, Rowe, and others report:

• Reduced cerebral blood flow on tilt
• Reduced cardiac output
• Reduced end-tidal CO₂
• Lower blood volume in a substantial portion of ME patients

Not every patient with low cerebral blood flow has low total blood volume, but the correlation exists.

•  Non-invasive Blood Volume Test (Daxor)

Daxor has been developing next-generation blood volume technologies; historically, their tests used albumin radiolabeling and were accurate but cumbersome...a fully non-invasive test released in August by Daxor needs verification. It could solve the historical barrier of radioactive labeling and long test durations.

Management/Treatment 

  

 

The non-pharmacological (lifestyle and behavioural) measures are widely considered first-line for POTS/OI, because of their safety and relative ease of implementation. For ME patients, many experts emphasise avoiding or reducing triggers, increasing blood volume/improving circulation, and cautiously using medications when non-drug measures are insufficient. 

Because there is no universally accepted 'one-size-fits-all' protocol and high-quality randomized controlled trials (RCTs) remain limited, treatments often need to be individually tailored.

 

(i) Non-pharmacologic first-line measures (widely recommended): 

 

These are typically recommended before (or in parallel to) medications. Many derive from POTS and OI expert consensus, and ME-specialist guidance (e.g. from the Bateman Horne Centre.

Key strategies include:

 

Fluid and salt loading / blood-volume expansion

 

Drinking 2–3 litres of fluid daily.

 

Increasing sodium intake - many guidelines suggest around 5–10 grams of salt daily (1–2 teaspoons) if tolerated.

 

Some research and clinical trials are exploring oral rehydration solutions (ORS) rather than intravenous fluids to expand blood volume in ME + OI.

 

Compression garments and external compression

 

Use of waist-high compression stockings or abdominal binders (or both) to reduce venous pooling and improve venous return when upright.

 

Physical counter-manoeuvres/positional strategies

 

When feeling symptoms: leg-crossing, squatting, muscle tensing, stooping can help acutely.

 

Gradual positional changes when moving from lying to standing; avoid sudden rapid uprighting.

 

Elevating the head of the bed (by ~10°) - helps redistribute fluids and reduce overnight fluid loss that can worsen OI.

 

Exercise/physical conditioning (carefully applied)

 

Starting with recumbent or semi-recumbent exercise (e.g. recumbent bike, rowing, swimming) to avoid triggering symptoms.

 

Gradual progression to upright exercise as tolerance improves, possibly including resistance training to improve venous return (leg/core strength).

 

Avoiding or minimizing triggers: Common triggers include heat, dehydration, prolonged standing, prolonged sitting/bed-rest, medications that worsen OI, etc.

 

For ME patients: avoiding over-exertion/’pacing’ is doubly important because activity beyond tolerance can worsen OI (and contribute to post-exertional malaise/PEM).

 

These measures aim to improve circulating blood volume, reduce venous pooling, stabilize hemodynamics, and increase orthostatic tolerance - often with fewer risks than drug therapy.

 

 

(ii) Pharmacological/Medical Treatments - When Non-Drug Measures Are Not Enough

 

When lifestyle measures are insufficient or symptoms are severe, certain medications or ‘volume-expanding/vascular-tone’ therapies may be used. Because OI/POTS are heterogeneous (hypovolaemic, hyperadrenergic, neuropathic, etc.), treatment often depends on the specific underlying subtype. Medications should be used selectively and individualized; options used in POTS include low-dose beta-blockers, fludrocortisone, midodrine, pyridostigmine, or iv fluids for short-term needs. The choice depends on the patient’s physiology and comorbidities. Medication should be guided by a clinician experienced in autonomic disorders.

 

 

 

Some commonly used medications/medical strategies:

      

Fludrocortisone used for 'volume-depleted/hypovolaemic' POTS/OI: helps retain sodium and water, expand volume.

 

Midodrine (a vasoconstrictor) - used for neuropathic or hypotensive forms: improves vascular tone, reduces venous pooling.

 

Pyridostigmine - sometimes used to improve vascular tone or autonomic regulation in neuropathic POTS/OI.

 

Beta-blockers (or heart-rate limiting agents) for hyperadrenergic POTS/symptomatic tachycardia; helps reduce heart rate and improve symptoms.

 

Other vasoactive or volume-modulating drugs (used case-by-case) e.g. when OI overlaps with other circulatory/autonomic pathologies; often requires close monitoring and specialist oversight.

 

Important caveats:

There are no universally accepted, definitive guidelines for POTS or OI pharmacological treatment; evidence is limited and individual response varies.

 

Treatment must be tailored - what works for one patient (e.g. hypovolaemic POTS) may not work or may worsen symptoms in another (e.g. hyperadrenergic or neuropathic POTS).

 

Because OI in ME may involve abnormalities beyond HR/BP (e.g. cerebral blood flow, vascular tone, volume regulation), specialist oversight is advised for pharmacotherapy.

 

What Major Clinics/ME-Specialist Organizations Recommend: 

 

The Bateman Horne Centre, a well-known US ME specialist clinic, lists OI management under its patient guidance: fluid & salt loading, compression garments, careful avoidance of triggers, and cautious use of medications / vasoactive therapies.

 

According to the UK-based ME Association, people with ME who show OI should be assessed and managed by clinicians with experience in autonomic disorders; non-drug approaches are a first step, but medications may be used when needed.

 

In clinical practice guidelines for OI/POTS (e.g. in cardiovascular textbooks), combining “volume expansion, vasoconstrictors, rhythm-control (when needed), and long-term monitoring” is standard, but authors note the ‘limited efficacy in severe cases’ and call for more research.

 

What the Research Shows: OI in ME - Why Individualised Approach Matters 

 

A study showed that in ME patients, abnormal reductions in cerebral blood flow during tilt-table testing occur regardless of fitness level or deconditioning (i.e. not simply due to being unfit), indicating a primary circulatory/autonomic dysfunction.

 

Because of that, relying solely on heart rate and blood-pressure criteria (as in classic POTS) may miss many ME patients with OI - meaning non-classical OI (e.g. impaired cerebral perfusion) may still benefit from management.

 

This underlines why a broad, individualized management plan (hydration, volume expansion, compression, careful exercise, triggers avoidance, possibly medications) rather than a ‘one-drug-fits-all’ - is recognized by ME-specialist clinics and advocacy groups.

 

What This Means for People with ME + OI/POTS 

 

Start with non-pharmacological measures - hydration, salt, compression, positional strategies, gentle conditioning - because they are low-risk, accessible, and often effective.

 

Use a tailored, 'phenotype-guided' approach if medications are considered - discussing with a clinician experienced in autonomic disorders.

 

Specialist involvement matters especially for ME patients, because their OI is often more complex (not just classic POTS/hypotension), possibly involving cerebral blood flow abnormalities.

 

Monitor and adapt over time - OI/POTS symptoms may fluctuate, and treatments may need adjusting depending on response, tolerance, and co-morbidities.

 

 

Useful Resources 

 

Please see management strategies and in particular table 4 via the link here 

 

The ME Association (UK) has detailed information covering the physiology, diagnosis and management (drug and self-help) of aspects of POTS

 

 

Sleep 

Sleep disturbances affect the quality, quantity, or timing of sleep. They can be caused by a number of factors, including medical conditions. For some ME patients, sleep disturbance is typically expressed by prolonged sleep, sometimes extreme in the acute phase, and often evolves into marked sleep reversal in the chronic phase. 

 

Good sleep hygiene is important for all people, including those with ME but when people with ME are still unable to sleep despite good sleep hygiene, their doctor might recommend taking medicine to help with sleep. 

 

Non Parmaceutical Strategies

 

First, people should try non pharma strategies before seeking over-the-counter sleep products or prescribed sleep medicine such as: 

• Reducing stimulants such as coffee, tea and alcohol. 

• Create a quiet environment.
  Make sure that light, noise and temperature are the best for good sleep. This might take some time to get this right.

• Sleep or rest in a recliner to elevate the legs 

• Pace day-time activities and incorporate rest periods. Over-exertion can increase insomnia.
• Listen to your body and rest or sleep when needed (this is important)
• Establish a regular bedtime if possible but also listen to your body and rest/sleep when you need it
• Quiet activities or listening to a relaxation CD/DVD before nighttime sleep are helpful.
• A warm bath prior to bed may relax the body
  
• Keep the bedroom cool, dark and quiet

 

Non Pharmaceutical Medications

 

• Over-the-counter (non-prescription) products like

  - melatonin (herbatonin for herbal variant) and valerian,

  - simple antihistamines such as Benadryl (diphenhydramine)  

 - Tylenol PM 

 - Advil PM 

 - passion flower and chamomile 

 - amino acids, such as L-theanine and L-tryptophan 

 - Kava tea 

 - magnesium 

 - B12 and CoQ10 in the morning helps improve sleep at night for some people

  - Magnesium Oil Spray for restless legs and general aches and pains

 

 

 

 

Pharmaceutical Medications 

 

People with ME are extremely sensitive to medications. For over the counter medications and prescription medications start at the smallest dose and use for the shortest possible time. 

 

What works for one person may not work for another so it can take time to find what suits you. Getting the dosage right to suit you can also take time. 

Suggested medications based on feedback from individuals in the ME community as per ME International (US). Not all medications will be licensed here or in your country.

 

• Klonopin (clonazepan) with a dosage of 0.5- 1mg to initiate sleep along with trazodone (25-50mg) or a tricyclic antidepressant to help maintain sleep. 

 

• Lunesta (eszopiclone), Rozerem (ramelteon), or Sonata (zaleplon).  These work to naturally stimulate the sleep center of the brain, and are not thought to be addicting. 

 

• Sonata has the benefit of being short acting (3-4 hours, so it can be taken for early awakening). 

 

• Belsomra (suvorexant) is the newest sleep medication. It works uniquely by suppressing orexin, a neurotransmitter that promotes wakefulness.  Belsomra has been alleged to help patients not only fall asleep but stay asleep. 

 

• The hypnotic drug Ambien® (zolpidem) is useful for both sleep initiation and maintenance. 

 

• Zolpidem increases the depth of sleep but users may adapt to the drug over time, and some people experience amnesia and/or sleep walking. 

 

• Analgesics and/or non-steroidal anti-inflammatory drugs (NSAIDs) can be used for pain and often benefit sleep as well. 

 

• Xyrem (socium oxybate) has some appealing properties, because it increases slow wave sleep and restores rapid-eye-movement (REM) sleep. 

 

• Amitriptyline 

 

• Nortriptyline 

 

• CBD Oil.

​

 

Typical causes of PENE/PEM: - Not sticking to a sleep schedule that works best. Waking up too early or too late; not sleeping the right number of hours each night; sleep disruptions:  noise, light, night sweats, insomnia, restlessness, restless legs, pain. 

 

 

It is important to make sure that you have no underlying sleep conditions e.g., sleep apnoea which should be addressed. 

  

 

 

Resource  

 

ME International's Guide to Sleep Disturbance which includes methods to combat sleep disturbances

 

 

 

Prescription Medications that purport to be effective in reducing symptoms for a subset of patients

 

For example, IV fluids, LDN, Abilify, and Ampligen.
 

IV Fluids are recommended in the pharmaceutical section of the International Consensus Primer under Energy Metabolism and Ion Transportation on page 18. 

Intermittent IV infusions of saline dramatically reduce symptoms and improve quality of life in patients suffering from postural tachycardia syndrome

(POTS) in particular.

 

The ME International Consensus Primer highlights the importance of recognizing low circulating blood volume:

“Vascular abnormalities suggest there is insufficient circulating blood volume in the brain when in an upright position, and blood may pool in the extremities.” (pg 6) 

 

Howevere, it may be that not everyone who has ME deals with low blood volume, but for those who it does affect it is something that can be treated.  

 

IV fluids can help improve a wide range of symptoms associated with Low Blood Volume in ME, for example,

 

• Being able to stand without feeling more ill
• Improved cognition
• Improved digestion
• Better sleep
• Improved mood 
• Alleviates some post-exertional neuroimmune exhaustion
• Reduced heart rate
• Improved heart rate variability
• Feeling less toxic

 

Resources

• The above list is from a blog post by Severe ME patient Colleen Steckel who explains her experience with IV Fluid treatment, see more here. 

 

• During Maeve Boothby O' Neill's inquest in 2024 Dr. Weir stated that if Severe ME patients get IV saline and nutrition with NJ [tube] most severe patients gradually improve where their life is not threatened. 

 

• A paper published in April 2024 may give insight as to why people with ME have chronic low blood volume. 

 

LDN has been a game changer for some people with ME, others have had no benefit. LDN is not a 'solve all' drug but rather something worth trying in conjunction with considered choices on diet & supplements. Liquid form is cheaper than capsules. GPs may not prescribe it without Consultant oversight. 

 

Advice from one patient was to start with 0.5mg - a very low dose for two weeks, then increase to 1mg, the intention to slowly titrate up to a dose between 3-4.5mg depending how the body reacts.

 

Resources

• LDN information book available on Amazon though quite a lot of medical speak, reading it demonstrates the wide range of conditions this drug can be used to address. 

‘The LDN Book’ – How a Little- Known Generic Drug Low Dose Naltrexone – Could Revolutionise treatment… Edited by Linda Elsewood 

 

• ME International's Information Sheet re LDN here 

 

• Very clear information on the mechanism of LDN here 

 

• Other information re LDN via links here and here

 

Abilify in low doses is an experimental therapeutic for ME available in Ireland. This is an article about Abilify, it describes the presence of inflammatory cytokines in ME. More information in another article.

 

Ampligen has been used for ME in a few private clinics worldwide for nearly 25 years but still is not widely available. It is currently not authorised by the European Medicines Agency for the treatment of ME in the European Union. See PQ Response in comments from Simon Harris in 2017 re availability in Ireland.

Fludrocortisone is an adrenal corticosteroid that plays a key role in regulating blood volume and blood pressure. It’s often used to treat neurally mediated hypotension (reduced blood pressure when standing) and POTS (increased heart rate when standing) as well as low blood volume.

 

Fludrocortisone and OI 

 

As mentioned previously Orthostatic Intolerance (OI), Orthostatic Hypotension (OH), Neurally Mediated Hypotension (NMH), and Postural Orthostatic Tachycardia Syndrome (POTS) are conditions which some individuals with ME and Severe ME suffer from. They are terms used to describe the exacerbation of symptoms during upright posture, that are relieved or ameliorated by lying down or reclining. 

 

Symptoms of OI may present as lightheadedness, headache, fatigue, tremors, heart palpitations, exercise intolerance, nausea, sensitivity to heat, and sleep abnormalities.  While OI is complex and not fully understood, the usual signals or mechanisms that maintain blood vessel tone, heart rate and contractility while changing positions from lying to standing don’t work correctly. This leads to venous pooling, decreased blood return to the heart, and lower cardiac output to the brain and body. 

 

Some individuals are aware of symptoms that occur during the episode, such as dizziness or palpitations (a sensation of increasing heart rate or intensity of each heart beat), while others are not. The body compensates in varied ways for these changes. On occasion, the person actually faints. Others develop rapid heart rate (tachycardia). NMH, POTS, OH are common manifestations of OI in ME. 

 

Fludrocortisone may help with low blood volume, orthostatic intolerance and POTS. It helps the kidneys retain more sodium which in turn increases blood volume. Its ability to constrict the blood vessels may help blood stop from pooling in the lower extremities when standing. 

 

Patients must increase their salt intake for this drug to work. 

 

 

Resource  

 

More here in a piece which includes information on effective use, side effects and more. It is important to discuss fludrocortisone's side effects and possible drug interactions with your doctor and pharmacist.

 

 

Medication reported by some members of the ME community in Ireland as being helpful (depending on the symptoms).

As with all medications each medication might not suit all. It's a case of trial and error with treatments.

These include:

Abilify - some extremely ill people with ME have had success, good for brain function.

LDN

Olanzapine

Xanax

Propranolol at a very low dose, a beta blocker used to calm the heart racing/shaky part of the adrenaline surge in ME.

Rivotril (Klonopin) a tiny dose of every morning (2.5 mg) to get a handle on overactive central nervous system’s adrenaline rushes.

Pharma GABA

Amitriptyline (takes time to find the ‘sweet spot’ at low doses for ME) useful for sleep, pain and migraine.

Mirtazepine at night to help with sleep along

Molipaxin

Melatonin

Pregnenolone

DHEA*  

 

Ivabradine 

 

Beta Blockers  

 

Slow sodium intake and increased hydration (for POTS)

 

Resource

• From the Grace Charity for ME please see their survey results re treatments below

 

 Treatments Which Have Helped 

 

Treatments about which there have been negative comments 

 

 

*DHEA is a steroid hormone produced by the adrenal glands and is converted to other hormones such as estrogen and testosterone. DHEA levels start to decrease with age and are found to be prematurely lower in people with ME. A few specialists do prescribe this supplement to their patients and some ME patients have reported being prescribed DHEA; however, most specialists are opposed to its use because of a strong potential to cause breast and ovarian cancer as well as prostate cancer. It is advisable to use DHEA for a short period and to keep an eye on levels when supplementing. It should not be used unless ordered by a doctor for documented abnormally low levels of DHEA. Canada and the UK have banned its sale over-the-counter. 

 

“Recently I’ve started a very very low dose of propranolol, a beta blocker, as it’s used in ME at a 1/10 of standard dose to ease the fight/flight response which is up regularly in us. It is finding a way to shut down which when your ‘activity’ is so utterly limited, cutting down means not toileting, not eating, not digesting as you’ve already got rid of everything else. I sometimes think if we could be knocked out for three months, fed, watered, cleaned and turned I wonder what we’d be like when we came round after three months absolute rest? 

 

In my case paralysis is the ‘shut down’ phase which means nothing happens for a few hours and in hospital, now they know how to care for me - and I do know how rare that is, then the slow climb up happens. We so desperately need our health system to understand the reality of the most severe forms of ME and to find ways to manage it.” - anonymous ME patient

 

 

Non Prescription Medication used by People with ME

 

Supplements  

 

There are many claims that certain nutritional supplements help in ME, as reported in patient feedback; these include multi vitamins, B vitamins, vitamin a, vitamin E, magnesium, sodium, zinc, folic acid, D-ribrose, essential fatty acids (omega-3s), carnitine (e.g., acetyl-L-carnitine), potassium, etc. 

 

Some supplements are very expensive and are not available on a medical card or any other scheme. It’s usually a chemist who can answer questions re availability and whether medications are covered on medical card etc.  

 

There are few data to provide a promising hypothesis for the effective role of mineral and vitamin supplementation in the ME pathophysiology and therapy, however, nutritional supplements are hinted to alleviate at least some of the problems encountered in ME.

 

Resource  

 

Please see feedback below from an ME charity in the UK in response to their 2014 Supplement survey of more than 2,000 people with ME: 

 

'62% of respondents used a vitamin/mineral supplement. Of these, 66% said it was helpful or very helpful; 33% said it made no difference, and 1% said it made them a bit or much worse.  

 

51% had made dietary changes to help them manage their symptoms. Of these, 72% said it was helpful or very helpful; 27% said it made no difference, and 1% said it made them a bit or much worse.'

 

 

 

Doctors might run tests to see if ME patients lack any important nutrients and might suggest supplements to try. One common deficiency in people with ME is low B12 and some manage with regular B12 injections. Others report low iron and low Vitamin D. If you have a low Vitamin D intake, speak to your doctor about taking a Vitamin D supplement, particularly if you are severely affected. Low iron etc can all be improved with help and supplementation. Follow-up tests to see if nutrient levels improve can help with treatment planning. Keeping an eye on maintenance levels is key to successful management.

 

More about some of the supplements mentioned above

 

COenzyme Q10, usually referred to as CoQ-10 (also called ubiquinone), is a vitamin-like substance which has notable cardioprotective, cytoprotective and neuroprotective activities. It is vital for the energy generating process at the cellular level in the mitochondrial electron transport chain. 

 

CoQ-10 is well regarded and used by physicians to treat various metabolic and neurologic diseases, cardiovascular conditions and diabetes. There are no contraindications, but general side effects may include stomach upset, nausea and headaches. 

 

It is commonly used by ME patients worldwide, available over the counter in low doses. Prescribed at higher doses by medics. CoQ10 may be prescribed by your doctor and bought through the medical card scheme. Having it prescribed and getting it on medical card saves a fortune. The best thing is to check with your chemist about what strength of CoQ10 is available on the medical card.

Advice re COQ10 as reported by a severe ME patient ‘When I started co enzyme q10 first I went from 30 mg to 100 and I felt my head was blown off. I went back to 30, then 60, then 90 and as time went on using the same gradual method I got to 200mg daily. When Dr R gave me 600mg, I went up to 400mg and then got to 600mg which I now take daily. It might just take your body a little adjustment time.’ ‘Take earlier in the day to avoid insomnia.’ 

 

The average daily dose recommended by ME clinicians is 100-200 mg. However, mitochondrial specialists and other specialists who see ME patients recommend the same dosage as used for mitochondrial disease patients, i.e., 300-400 mg twice a day.  

 

COQ10 600mg has been covered under DPS, however your pharmacy will need to find out the ‘code’ to put the COQ10 through DPS system. If you are near the maximum of €114 insist that the pharmacy find this number and tell them others are getting it covered. The pharmacy needs to call the PCRS to confirm it for you. Go to another pharmacy if the one you try is unhelpful. 

 

NB!

Individuals with certain illnesses may need to have their medications adjusted or be more closely monitored, e.g., those with type-2 diabetes (CoQ-10 lowers blood sugar levels), those on anticoagulant drugs, and those using statin drugs (which decrease CoQ-10 serum levels).  

Some beta-blockers may block CoQ-10 dependent enzymes. 

 

 

Vitamin B12 deficiency often presents as chronic fatigue, digestive disorders, pernicious anemia, various memory, mood or neurologic problems. B12 deficiency may also be present in some individuals who consume a very limited vegan-type diet. Long-term use of proton pump inhibitor medications which reduce stomach acid (like those controlling GERD) may also interfere with the absorption of B12.

Vitamin B12 is a water-soluble vitamin found naturally in animal foods, fish, and dairy products. It is vital to red blood cell formation, absorption of foods, metabolic regulation, growth, and protection of nerve cells and function.  

 

Vitamin B12 is best taken via injections (hydroxocobalamin).

Lab results can show B12 in the range but low so not flagged and the GP usually has to be convinced that an ME patient can benefit from maintaining B12 at higher levels, ie mid range and above. Some ME-aware consultants suggest maintaining B12 at high doses. 

Vitamin B12 injections, when used for ME are often started at a high-dose of approximately 3000 mcg for several doses several times per week/month depending on levels following testing, i.e., at higher and more frequent doses than usual because of the amount needed to notice improvement, and then it is tapered down.  

 

Sublingual B12 is the preferred oral form, from 1000 up to 5000 mcg day. Once a person has reached a good maintenance level following injection treatment, daily sublingual treatment is sufficient to maintain optimal levels. Keep an eye on levels. 

 

Vitamin B12 is generally not found to be toxic or problematic in the majority of people unless they are sensitive to the compounds that make up the vitamin, an ingredient in the injection material. 

 

 

 

 

Vitamin D3 1000iu is taken by many people with ME but only for a set period of time, just to build up reserve levels. 

 

If you are housebound, or don’t go outside much, your doctor should check your vitamin D levels, as you are at risk of low Vitamin D status. 

Some doctors recommend Vitamin D-3 at about 1000 IU daily, but only for a set period of time, just to build up reserve levels. The daily dose would then be reduced to about 800 IU/ day and increased again only when patients are found to be deficient.  

 

A Vitamin D supplement of 10 Micrograms daily is recommended all year round for those at risk. Levels need to be checked regularly when taking. 

Vitamin D deficiency, in particular, is often associated with bone loss and multiple sclerosis, but also with persistent musculoskeletal pain.

 

The October 2021 NICE guideline for M.E./CFS advises health professionals as follows (sections 1.12.23 and 1.12.24):  

 

"Be aware that people with ME may be at risk of vitamin D deficiency, especially those who are housebound or bedbound. For advice on vitamin D supplementation, see the NICE guideline on vitamin D. Explain to people with ME that there is not enough evidence to support routinely taking vitamin and mineral supplements as a cure for ME or for managing symptoms. If they choose to take a vitamin or supplement, explain the potential side effects of taking doses of vitamins and minerals above the recommended daily amount."

 

NB! 

It is important to remember that Vitamin D3 is a fat-soluble vitamin and stored in fatty tissues, so it has the potential of becoming toxic if levels get too high. 

Patients should get their levels checked and then be advised and monitored by their own physicians regarding the best dose for their needs.

 

Calcium and Magnesium are often used at night to help relax muscles and promote sleep. These minerals offer a wide range of other benefits. Since magnesium is an electrolyte which influences heartbeat and potassium levels (which also affect heartbeat), it is wise to only supplement with magnesium or potassium with regular checks by a doctor of serum blood levels of both minerals.

Calcium - the advantages of calcium are many, such as maintaining healthy bones and teeth, healthy muscle tone and function, cardiac function, and nerve transmission. Calcium should not be taken in greater amounts than 500 mg at a time in order to maximize absorption, and it should be taken with meals. Too much calcium could lead to kidney stones. The average daily dose of calcium is 1000-1200 mg daily. Since magnesium works closely with calcium, the suggested ratio is 2:1, calcium to magnesium. Recent research has shown that calcium works best when Vitamin D levels in the blood are adequate.

 

Magnesium is a mineral of particular importance in ME because of its involvement in numerous biological and metabolic functions. Magnesium affects the production of cellu­lar energy, stability of cells, nerve conduction and muscle contraction. It helps transport oxygen to muscles, which in turn, strengthens but also relaxes muscles. Furthermore, there is a link between magnesium and functioning of the immune system. An activated immune system uses magnesium and zinc at rapid rates.

Studies have shown that ME patients in particular have lower levels of intracellular magnesium than healthy controls. The typical magnesium test only measures serum levels of magnesium and while serum levels can be normal, intracellular levels can be low at the same time. Magnesium deficiency can cause low potassium. 

Other signs of magnesium deficiency are fatigue and muscle cramps. There is some evidence that magnesium has anti­osteoporotic activity. It definitely has anti­arrhythmic activity. Magnesium may have anti­hypertensive, glucose-regulatory and bron­chodilatory activity and possible anti-migraine activity. Since magnesium is an electrolyte which influences heartbeat and potassium levels (which also affect heartbeat), it is wise to only supplement with magnesium or potassium with regular checks by a doctor of serum blood levels of both minerals.

Magnesium is contraindicated in those with kidney failure and certain types of heart problems. It should not be taken two-to-four hours before or after certain medications such as bisphospho­nate, a quinolone or a tetracycline, as magnesium can interfere with their absorption. The standard recommended dose for healthy people is 100-300 mg per day. But it is often used in higher amounts of 500-750 mg for ME. In view of magnesium's effect on so many functions and other medical conditions, it would be advisable for one's doctor to determine the appropriate dose for each individual.

 

 

 

Acetyl-L-Carnitine is one of several forms of carnitine. Carnitine has the chemical structure similar to an amino acid and is involved in fatty acid transport across mitochondrial membranes, which increases the use of fat as an energy source. Acetyl-L-carnitine may have neuroprotective, cytoprotective, and antioxidant activity. Mitochondrial membrane potential improves with acetyl-L-carnitine, which improves the functioning of mitochondria. 

People with seizure disorders should only use it under medical supervision. Adverse reactions are infrequent and are mild gastrointesti­nal symptoms such as nausea, vomiting, abdom­inal cramps and diarrhea. Antiseizure medications (valproic acid), nucleoside analogues, a type of antiviral treatment (didanosine, zalcitabine and stavudine), and pivalic acid-con­taining antibiotics may lead to secondary L-car­nitine deficiency and the need for acetyl-L-carnitine. Dosage may be 500-2000 mg daily in divided doses.

Important to Note 

 

More is not always better, especially in the case of fat soluble (A, D, E and K) vitamins because they are stored in the liver and fatty tissues. There is also a risk in isolating and taking certain vitamins by themselves as they may trigger an imbalance or deplete other nutrients.Therefore, balance and synergy of vitamins and minerals are two other important considerations.  

 

It is important to keep in mind that although dietary supplements are promoted as natural alternatives, they will still contain many potent compounds that can trigger various biochemical reactions or changes in the body.

People with ME, especially those with hyper sensitivities, should check for additives, fillers and waxy coatings in supplements and realize that not all vitamins/supplements are extracted from "natural" food sources.  

 

It is strongly urged that people consult with a qualified nutritional therapist, preferrably one that is ME aware/knowledgeable.

 

 More Useful Supplements

Ashwaganda is reported to be helpful for stress, anxiety and sleep. See more here.  

 

 

Melatonin is reported to be useful for sleep. It is a hormone produced by the pineal gland in the brain and used by the body to regulate sleep/wake cycles. (It is at its highest level at night). It is considered to be fairly safe and has been found to be beneficial in far lower amounts than what most formulas contain. One ME specialist recommends using only about 0.3 mg and not the standard 3.0 mg dose. Several precautions need to be taken with melatonin in those with cardiovascular risks, as it can affect blood pressure and trigger abnormal heart rhythm. It should be avoided by those taking blood-thinners. At higher levels it can also raise blood-sugar levels, aggravate Crohn's disease symptoms, and disrupt other hormones (which can lead to a change in menstrual patterns, for instance).

Some people with ME, especially those with Severe ME, are very sensitive to medicines and treatments and must avoid them. 

Always keep in mind the golden rule for any medications and supplements, start with a low dose and gradually increase it, it may take time and patience to reach the level/dosage at which you get the benefit you need; be mindful that some treatments work well for some people and not for others so it may be a case of trial and error trying to find a medication that suits you.

 

 

 

 

 

Other Treatments and Management Strategies 

 

Balanced diet 

 

A balanced diet is important for everyone’s good health and would benefit a person with or without any chronic illness. Try specific dietary plans:  e.g., gluten free, dairy free, low carb/sugar Slow-release or low GI foods can help sustain your energy levels over a longer period. Low GI foods include oats, wholegrain cereals, pasta, yoghurt, and many fruits. Having regular frequent and smaller meals can also help. 

 

Feeling nauseous is common in ME. Eating little and often, especially dry food such as ginger biscuits, toast, or crackers, can help the feeling of sickness. Some people find it helps to sip at a drink often rather than drinking copious amounts in one go. 

 

Determine what works best for your body. Carry healthy snacks to avoid low blood sugar. 

Ensure hydration. Bring water, track hydration, use flavour packets.

Eat when you need to eat. Not what is best for the family.

Never skip a meal, even if nauseous. Always have food you love to eat available, to eat when not feeling well.

 

 

IBS Symptom Management

Stomach-ache, bloating after food and other stomach discomforts are quite common in ME. Having regular meals with healthy food choices and changing your source of fibre are ways that may help. If these symptoms are causing you a lot of discomfort, talk to your doctor about being referred for more individual advice. An ME-aware nutritional therapist can be useful.

Probiotics may be considered a therapeutic possibility for ME.

 

Alternative Therapies   

 

Might include meditation and relaxation techniques like deep breathing and muscle relaxation, massage, and movement therapies such as stretching and very gentle yoga. These can reduce stress and anxiety.

NB! Being able to practise some relaxation techniques depends on your severity of ME.

 

 

 

Using a Heart Rate Monitor 

 

Heart rate is a common cardiovascular parameter measured by commercially available biometric devices, so they may be useful tools to help people with ME maintain activities at intensities below ventilatory anaerobic threshold (VAT).  

 

Heart Rate Monitoring (HRM) during activity can be a strategy that provides useful feedback that promotes symptom awareness and control. When a higher than usual heart rate is associated with symptoms and perceived exertion it becomes a powerful tool to manage the abnormal post exertion response in ME, i.e., Post Exertional Neuro-immune Exhaustion (PENE) (also referred to as PEM).  

 

PENE symptoms include a marked physical and or mental fatigue in response to increased activity/exercise. Even light/easy everyday tasks can exacerbate extreme fatigue, cause dizziness and other horrendous symptoms and prolong recovery time. It can also be triggered by mental exertion, stress, sleep deprivation and infection. It is very important to try and avoid PENE if possible as it is believed to potentially set back recovery. The exhaustion felt may be immediate after the activity/exercise or may be delayed by hours or days. Recovery normally takes 24 hours or longer and often people find that their heart rate is higher than normal during ‘everyday tasks’. 

 

Many people with ME use Heart Rate monitors as an energy management strategy to pace their daily activity and monitor their body’s responses to physical exertion more accurately. Although there are limitations, Heart Rate Monitoring has many benefits including helping people with ME to understand and manage their PENE (also referred to as PEM).  

 

There are as yet no defined protocols for heart rate monitoring and people with ME are using different methods. A heart rate could be set as a limit to aim to stay under to avoid or manage the abnormal post exertion response that happens following activity i.e., as a guide to minimise the post exertion response, i.e., PENE.

 

It is unclear what causes PENE. One area of research using cardiopulmonary exercise testing (CPET) has shown that people with ME have a reduced ventilatory anaerobic threshold (VAT) especially when the test is repeated on a second consecutive day

For those with ME the Workwell Foundation developed the 2-day Cardiopulmonary Exercise Testing (CPET) that measures AT and shows clearly that PENE results after exertion, further dropping AT on the second day. This is the most accurate way to measure your AT and the best test to use in a disability case because it provides evidence of PENE (though not all ME patients are able to do this test).

The VAT or lactate threshold is the point at which a person switches from aerobic to anaerobic metabolism, and there is an increased production of lactate as a by-product. People with ME have been shown to reach this threshold more quickly than healthy people, and it is theorised that this could be due to inefficient and damaged aerobic metabolic processes causing PENE. 

The early production of lactate during activity or inefficient production of adenosine triphosphate (ATP) could explain the symptoms of PENE such as muscle and joint pain, cognitive dysfunction and extreme fatigue in ME. In addition, decreased oxygen extraction in a subset of ME patients suggests ME involves a problem of oxygen utilization rather than bioavailability. This phenomenon may be responsible for observed maladaptation in autonomic function, including orthostatic and chronotropic intolerances.

It follows from findings of physiological studies that pacing activity intensities and durations may help people with ME to stabilize symptoms and functioning.

Using a heart rate monitor, to measure heart rate, heart rate variability, and other factors, allows people with ME to observe their energy usage, and learn how to stay within their safe limits. 

 

This pacing method is often used in conjunction with other treatments e.g., extreme resting. 

 

Anecdotally, some people experience gradual improvements in their health when using a heart rate monitor. 

 

An energy management strategy incorporating heart rate monitoring (HRM), first developed by the Workwell Foundation in 2010, has been incorporated into a number of consensus and guidance documents, and is considered a reliably effective intervention among people with ME. This energy management strategy suggests identifying the average resting heart rate over seven days and then setting a limit of 15 beats above that resting heart rate (HR) using HRM to reduce activity above that limit. 

 

Resources 

 

• Please see the Workwell Foundation's ME Activity Management with A heart Rate Monitor factsheet here 

 

• Please see the Workwell Foundation's 2023 webinar/video (1 hr long incl 45 min presentation & Q&A) ' Heart Rate Biofeedback for Myalgic Encephalomyelitis: From Physiology to Practice', which includes information on monitoring heart rate and using a heart rate monitor to limit the post exertional response in ME, i.e., PENE (also known as PEM): here

(More information re HRM below which shows the different methods of HRM by various people.)

 

• Heart Rate (HR) & Post-Exertional Crashes in ME, see Suzan Jackson’s most popular blog posts which explains how HR relates to exertion intolerance, how to use a HR monitor to prevent crashes, how to improve stamina, and choosing a HR monitor here

 

• Heart Rate monitoring from Sally Burch in her blog "Just ME"

• Tips on using a HR Monitor from Caroline Christian (US) here

 

• HR Monitor Facebook Group here 

 

• Heart Rate Monitoring by Physios for ME (UK) here

 

 

 

 

 

IMPORTANT WARNING - GRADED EXERCISE THERAPY (GET) or any incremental activity therapy CAN CAUSE YOU HARM

Graded Exercise Therapy is NOT the same as Pacing. GET requires you to gradually increase your activity over a period, potentially pushing you to repeatedly trigger the PENE response described above. GET has been reported by many patients, scientists & some orgs to be unhelpful and harmful and has left some patients significantly worse than they were before they started. GET is not an appropriate treatment for people with ME.

 

 

 

 

Managing Relapses and Adrenaline Surges in ME 

 

Assisting the ME patient in managing relapses and adrenaline surges patients have strict limits on how active they can be. If these limits are breached, symptoms worsen immediately and there is also a further deterioration 24 - 48 hours later, as well as the potential for repeated or severe overexertion to prevent any type of recovery, or cause disease progression or even death. 

 

See more from The Humming Birds Foundation for ME on Managing Adrenalin Surges

 

 

 

Other Resources 

• A 2 pg Handout for doctors & other medical providers

from ME International offers a path to introduce medical professionals to the wealth of information found in the ICP

 

• Coping with Symptoms from ME ICC Info and ME ICC and Other Marginalises Diseases with tips organized by symptoms Here

 

 

• Information about Pacing

Dialogues for a Neglected Illness on Pacing

 

 

• Pacing Guide 

from New Zealand group ME Awareness NZ

 

 

• Energy Envelope 

Finding your Energy Envelope from ME/CFS Fibromyalgia Group

  

 

• Vitamins and Electrolytes

Information about vitamins & electrolytes by Colleen Steckel here

 

• Supporting People with Severe ME in a Healthcare/Other Setting in the Safest Way  

A 2004 piece by Greg Crowhurst here which was published in the Nursing Standard (UK) in February 2005 (pgs 19, 21, 34-38). The information emphasises that there is a lack of medical education and awareness about severe ME and that it is misunderstood despite its seriousness.

 

Please note:

 

Treatments and management techniques mentioned above can help relieve some symptoms, but this is a matter of trial and error; the illness has an individual element - what helps one person might not work for the next. Your GP and/or specialist can help with a range of issues, including sleep disturbance, coping with pain and energy management. 

There is a very supportive consultant with good knowledge and an interest in ME in Dublin who treats and manages patients’symptoms. Please get in touch with ME Advocates Ireland (MEAI) if you wish to know more.

Email: info@meadvocatesireland.com
 

 

 

 

IMPORTANT WARNING - GRADED EXERCISE THERAPY (GET) or any incremental activity therapy CAN CAUSE YOU HARM

Graded Exercise Therapy is NOT the same as Pacing. GET requires you to gradually increase your activity over a period, potentially pushing you to repeatedly trigger the PENE response described above. GET has been reported by many patients, scientists & some orgs to be unhelpful and harmful and has left some patients significantly worse than they were before they started. GET is not an appropriate treatment for people with ME.

 

 

 - Questionnaires for Continual Assessment and Tracking Symptoms, Severities & Impact

Doctors, as well as patients could use several questionnaires, which are based on research, to track symptoms and severities following diagnosis. These include the same questionnaires suggested for diagnosis, i.e., the De Paul Symptom & Severity, PEM and Paedriatric questionnaires (parent and child) and the Bells Disability Scale.

 

• Symptom and Severity DSQ-2 Questionnaire here

• Post Exertional Response Questionnaire DSQ-PEM-2 here

• Paediatric Questionnaires: 

Parent Form DSQ-Ped here

Child Form DSQ-Ped here

 

• Bells Disability & Severity Scale 

 - Films about ME 

From 'Dialogues for a Neglected Illness', a series of educational Films about ME, with special focus on Severe ME, by Natalie Bolton & Josh Biggs, produced with a Wellcome Public Engagement Fund Award.

This collection of films cover a variety of topics and gives a multi-faceted understanding of the disease Myalgic Encephalomyelitis from the perspectives of medical professionals, scientists, research professionals specialising in ME and, importantly, also feature the experiences of patients and carers – with about a dozen patients interviewed.

‘Dialogues’ addresses an important gap in the educational material for ME. The project has been included in medical education resources in the UK and the US.

Dialogues is a resource which patients can use to increase their own understanding and those of their families, friends and carers, as well as helping doctors, medical students, physios, OTs, social workers, carers, educators and research professionals, understand more about this disease and the issues involved.

The 'Dialogues' set of films covers various topics:

Introduction to ME  (15 mins)
Understanding Post-Exertional Malaise – a hallmark symptom (15 mins)
Post-Exertional Malaise  (PEM) in ME –  a brief guide (6 mins)
Activity and Energy Management – Pacing (16 mins)
Severe and Very Severe ME (15 mins)
Symptoms and Management of Very Severe ME (19 mins)
Hospital Admission – Issues and alternatives for severely ill ME patients (16 mins)

Understanding Graded Exercise Therapy for ME part 1 (9 mins)
Understanding Graded Exercise Therapy for ME part 2 – The PACE Trial (9 mins)
Patients’ Accounts of Key Symptoms

1. Reduced Function (20 mins)
2. How does the disease start? (27 mins)
3. Post-Exertional Malaise – a hallmark symptom that is essential for a diagnosis of ME (22 mins)
4. Cognitive Impairment – a core symptom of ME (18 mins)
5. Sleep Dysfunction – a core symptom of ME (12 mins)
6. Orthostatic Intolerance (11 mins)
7. Pain (12 mins)
8. Hypersensitivity (13 mins)

The Tangled Story of ME: Controversy, Denigration and Ignorance  (1hr 11 mins)

Please access all the films here

 - Important Patient Documents To Consider

Seldom do two ME patients present with the same set of symptoms and severities, a person with ME has a unique set of symptoms and fluctuating severities, as well as their own unique response to exertion, and response to medications, With that in mind it is important to know that each patient that a doctor or other healthcare staff sees will have their own individual needs.

Included below are two sample documents which may be completed by the patient to outline their individual needs. They are carried by some patients who attend in a healthcare setting such as a hospital or in ED and include important in-patient information and discharge planning notes, i.e., Hospital Transfer Notes, Personal Care Plan and Needs Statement

  

Hospital Transfer/Hospital Stay Notes 

 

These are short handy notes with all the information about you that anyone transferring you to hospital or managing you in hospital or other care setting can read quickly. The notes tell a lot about your illness and your needs in a short snappy way for a busy hospital/other care setting environment. They are a useful alternative to the more detailed Care Plan which you could also include in your medical file or bring with you when you are going into hospital or another care setting.

Please see Hospital Transfer/Hospital Stay Notes Template here 

Please see Hospital Transfer/Hospital Stay Notes Sample here 

 

Personal Care Plan

 

• would outline the severe ME patient’s illness and needs;

• would outline the difficulties the patient has being in the unfamiliar environment of a hospital where there are many potential ‘harms’ to their health;

• would warn medics of other difficulties that might come about;

• would be an individual file on each patient put together by the patient and/or carer, together with information added from the patient’s primary carer and the specialist consultants the patient attends;

• would include strict protocols to make arrival, admission, stay, and discharge, as well as medical assessments and procedures as easy as possible on the person with Severe ME;

• would go some way to help prevent relapse, paralysis, and other horrific symptoms;

• would be different and personal to the individual patient's needs.

 

It is important to remember that the ME patient may carry their care plan file for any hospital admission including ED, or their plan may be in their medical file held by a doctor. 

 

Please see sample Personal Care Plan

Needs Statement

 

Based on the HSE’s 'National Guidelines on Accessible Health & Social Care Services' (2014), the patient's 'Needs Statement' can be used during a hospital admission or other care setting, when the patient is faced with the problem of how to explain ME & their individual needs to healthcare staff.

 Please see sample My Needs Statement

 - Creating an ME-Accessible Healthcare Setting  - Information Sheet  

People with Myalgic Encephalomyelitis (ME) have a limited amount of energy and suffer from a post exertional response/crisis, i.e., PENE. Helping them conserve their energy and providing an ME- friendly environment will reduce the impact of attending essential medical appointments. See MEAI's useful information sheet with tips to aid a person with ME attend their appointment: here

"The single biggest factor determining recovery and remission from Myalgic Encephalomyelitis is undoubtedly appropriate rest in the early stages of the illness. The importance of avoiding overexertion in ME can not be overestimated."

  - Information Sheets and Other Resources

• The Basics for Treating ME : 4-page Handout

•  Emergency Room Information Sheet here

•  Anaesthesia Info for ME Patients here 

•  Avoid an ME crash, i.e. avoid Post-exertional Neuroimmune Exhaustion (PENE), summary of advice here 

• Coping with Symptoms Information Sheet here  

• Low Blood Volume in ME and IV Fluid Treatment here 

 

 

Thanks to Colleen Steckel, North Carolina/Ohio ME & FM Support Group, ME International & ME advocacy.org for the above information sheets

 - Physio Care - How to work safely with people with ME

We often hear of people with ME looking for or being referred to the support of a physiotherapist. 

While physios do not necessarily work in ME services, (because there are no ME services) and have not been educated about ME their standard treatments might not be suitable for someone with ME so they need a basic level of awareness about ME to be able to adapt their treatment.

Physiotherapy can be beneficial for people with ME in terms of:

​

• Pain relief

• Postural management / prevention of contractures

• Improving and maintaining respiratory health

• Equipment provision and activity modification to improve quality of life

​

Physios need to know how to respond safely and appropriately to people with severe ME, keeping in mind how easily you may trigger the abnormal post exertional response in ME, i.e., PENE. Factors to consider include:

​

• Keeping light to a minimum

• Keeping the volume of your voice low

• Avoid wearing scented products

• Consider obtaining subjective information through family and carers, or in short bursts to avoid over-exertion

• Determine how you will measure the tolerance and success of any intervention, keeping in mind post exertional malaise is a delayed response

​

​

Physios for ME (UK) created a new downloadable one-sheet entitled “How to work safely with people who have ME/CFS”, please see that guide here and here

Energy Management in ME by Physios for ME here

Heart Rate Monitoring by Physios for ME here

More about Physio care in ME here

Important Note: Currently there is no evidence for any effective physiotherapeutic interventions for people with ME when diagnostic criteria includes PENE. 

Thanks to Physios For ME (UK) for the above information 

Further Information and Resources  

 

 Practical Supports 

• Mobility Aids here 

• Tools for Hospital or Other Care Setting here

 

 

Supports Available in Ireland 

• Public & Community Health Supports Ireland here 

• Irish Welfare Payments here   

• Here’s a link to the HSE’s list of Reimbursable Items - Medicines and Aids   

 

Managing Severe ME

Not all suggestions for managing ME will be suitable for managing people with severe ME. Please see our webpages re managing severe ME here 

 

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance.