Managing and Treating Myalgic Encephalomyelitis

There is currently no cure for Myalgic Encephalomyelitis (ME), and no universal treatments available, however, there are some strategies that healthcare professionals and patients can use to manage symptoms and symptom severities. Early management following illness onset may reduce the risk of further disability and the patient's condition deteriorating.

There are currently no HSE guidelines on Myalgic Encephalomyelitis (ME) so we have put together some useful information to support ME patients and others involved with the patient with regards to managing ME.  

 

NB: Management Strategies outlined below are mostly suitable for people with mild and moderate ME, and some people with Severe ME, not all advice 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 presented below. Please see a link to our webpages re Managing Severe ME at the bottom of this page.

About PENE 

We need to know about the cardinal symptom in ME to know about the significance of some management strategies. 

PENE - The cardinal feature in Myalgic Encephalomyelitis (ME), the exertion intolerance response or exertion intolerance crisis in severe ME, is the distinguishing feature of ME, referred to as Post Exertional Neuro-immune Exhaustion (PENE) by the International Consensus Criteria and Primer (also referred to as PEM by others).

Further distinguishing 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 often prolonged period of recovery to baseline illness severity and symptoms.

Patients may use language such as 'crash', 'setback', 'relapse', 'payback' to describe exertion intolerance, i.e., PENE.

PENE is the physical inability to produce sufficient energy on demand. 

PENE can lead to cognitive and muscle dysfunction to the point of paralysis and loss of speech. 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 significantly improves health quality, but avoiding all the things that cause PENE is difficult and can lead to isolation. 

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

Because PENE limits the ability to be mentally and physically active, it often leads to work disability. Once it is clear someone is considering an ME diagnosis due to PENE, it is advisable to stop work and seek disability right away. Living within the limited energy production window as early in the disease as possible leads to 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, i.e., PENE.

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

Avoiding PENE

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

• exercise intolerance avoidance management strategies such as pacing* and resting* 

• symptom management to reduce symptom burden & increase QOL 

• providing 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.

Summary 

Post Exertional Neuro- Immune Exhaustion (PENE) 

 

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
Learn your health patterns
Practice techniques like meditation
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 covered within and across the information below in the various information included and in 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 

“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 (ICP) 

The pathophysiology of ME and laboratory findings must be reflected in all treatment/management programs. Adverse reaction to exertion accompanied by a prolonged recovery period must be respected and accommodated. 

Personalised Management & Treatment guide starting on page 13 of the ICP is suitable for collaborating with a medic and planning your treatments and management. All health-care personnel can become sufficiently knowledgeable to manage ME following diagnosis by adopting and using the 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 treatments 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 appropriate management should prevent inappropriate or harmful approaches taking place – e.g. attempting to ‘work through illness’ – and should therefore 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*

Pushing through when experiencing 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 and minimise PENE.

Pacing is a therapeutic strategy and lifestyle of managing symptoms and exertion within the patient's energy threshold. 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 your quality of life and reduce symptoms. Pacing and rest are currently the most effective management tools for some people with ME.

When someone is pacing, they are undertaking less activity than they have energy for.

Pacing 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 they can do to prevent relapse even if you feel like doing everything.

Pacing, like any other skill, must be practised and becomes easier over time. 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 PENE. It helps to keep a diary.

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

Once you have identified your activity and PENE patterns, the next step is to minimise or avoid them. Understanding your triggers, and how much of them you can tolerate before they worsen your symptoms, is a valuable tool in helping you to manage your illness. 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.

 

Video about Pacing from Dialogues for a Neglected Illness here.

 

More on Pacing here from The Nightingale Research Foundation 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 energy that you can safely use without triggering relapse. How much energy you have will depends 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 – the need 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 that 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 thing when you are feeling better.

If the Energy Envelope theory doesn’t suit there are other similar strategies e.g., the Spoon Theory and the Bowl of Marbles Theory.

We referred to PENE, the cardinal feature of ME as per the ICC. PENE is explained in Section A in Table 1. of the ICC 

 

 

 

  

Step by Step Symptom Management

 

ME patients typically present with a multitude of symptoms indicating a multi-system disorder. And individuals have different clusters of symptoms. This can be overwhelming for both the clinician and patient to work through. However, by taking a structured, step by step approach, health 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 or the doctor and patient can discuss the patients most debilitating and severe symptoms.

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). 

ME patients are typically sensitive to pharmaceuticals, so it is advisable to start on low doses and titrate up slowly. 

 

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 quite common symptom with ME.

Over-the-counter painkillers can help ease headaches, as well as muscle and joint pain. 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.

Other pain management methods include stretching and movement therapies, gentle massage, heat, and toning exercises. Acupuncture, when done by a licensed practitioner, might help with pain for some patients. Some people with ME have reported that this helps them a lot.

 

ME International's Guide to Pain Management 

 

 

 

Orthostatic Intolerance: 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.  

A chart for tracking info can be found on pages 3 and 4. 

 

POTS

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

 

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

 

Sleep 

 

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. First, people should try over-the-counter sleep products. If this does not help, doctors can offer a prescribed sleep medicine, starting at the smallest dose and using 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. 

 

Know how much sleep you need and stay consistent. Do not oversleep or under sleep. Create an effective sleep environment:  quiet, dark, correct temperature, comfortable bed linen. 

 

Typical causes of PENE: - 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. 

 

ME International's Guide to Sleep 

 

More suggestions further below to help sleep. 

 

 

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; many individuals with ME suffer from POTS.

 

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 (my husband can attest to that one)

• Alleviates some of my post-exertional neuroimmune exhaustion

• Reduced heart rate

• Improved heart rate variability

• Feeling less toxic

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  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 into 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 and 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.

 

Orthostatic Intolerance (OI), Orthostatic Hypotension (OH), Neurally Mediated Hypotension (NMH), and Postural Orthostatic Tachycardia Syndrome (POTS) are conditions which individuals with ME and Severe ME also 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. 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.

 

 

Medications 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) great for sleep and pain

Mirtazepine at night to help with sleep along

Molipaxin

Melatonin

Pregnenolone

DHEA*  

 

Ivabradine 

 

Beta Blockers  

 

Slow sodium intake and increased hydration (for POTS  - more above under POTS)

 

 

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

 

 

Common Non Prescription Medication used by People with ME

 

Other 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; please see feedback below from an ME charity in the UK in response to their 2014 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.

 

 

 

 

 

Management strategies that do not involve use of medications

 

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. 

• 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) 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 document 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.

 

NB: 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) 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 Intolerance DSQ-PEM Questionnaire

• 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, by Natalie Bolton & Josh Biggs, produced with a Wellcome Public Engagement Fund Award 

• Activity and Energy Management - Pacing

 - 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., Personal Care Plan and Needs Statement

  

 

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 &  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.