About Managing & Treating Myalgic Encephalomyelitis (ME)

 

 

 

“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) 

 

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.

• Early Diagnosis

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

• Energy Envelope Technique

• Medical Treatments

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

• Using a Heart Rate Monitor

• Managing relapses and adrenaline surges ME

• From the International Consensus Primer, the ICP 2012

• Other Resources

 

Early Diagnosis

Early Diagnosis is essential.

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.

Did you know: 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.

* 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 recognition of other interventions such as IV fluids, peg feeding, etc is necessary.

 

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

 

 

 

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.

 

 

 

 

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 . 

 

 

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.

 

 

 

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.

Here is an excellent handout sheet from North Carolina/Ohio ME & FM Support Group's via ME International re Cardiac issue management. This sheet has specific information regarding cardiac issues seen in ME. A chart for tracking info can be found on pages 3 and 4 

 

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.

More advice on sleep management and treatments from ME International here

 

There are medications that purport to be effective in reducing symptoms for a subset of patients.

For example, LDN, Abilify, and Ampligen.

 

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.

Contact us by email at info@meadvocatesireland if you want more information on LDN and/or how to get LDN in Ireland if you are not having any success with your GP/Consultant.

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.

 

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

 

Very clear information on the mechanism of LDN here

Other information re LDN via links below:

Link

Link

 

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.

 

 

Medications reported by the ME community in Ireland as being helpful.

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.

 

Common Non Prescription Medication used by people with ME

COQ10 - commonly used by ME patients worldwide, available over the counter in low doses. Prescribed at higher doses by medics. CoQ10 may be prescribed by ones doctor and bought through medical card. 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.’

 

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.

 

Vitamin B12 taken best via regular injections. Some ME-aware consultants suggest maintaining B12 at high doses e.g. 600. Lab results can show B12 in the range but low so not flagged and GP usually has to be convinced that ME patient can benefit from maintaining B12 at higher levels, ie mid range and above.

 

Vitamin D3 1000iu is taken by many people with ME because of lack of sun in Ireland. Levels need to be checked regularly when taking.

 

Other Supplements worth trying

The Hummingbirds Basic Supplement guide is very useful re supplementation. It says what supplements work well together and also mentions about toxicity concerns for anyone worried about taking too much of something.

 

 

Here’s a link to the HSE’s list of Reimbursable Items - Medicines and Aids Provided. It’s usually a chemist who can answer questions re availability and whether medications are covered on medica card etc.

 

 

 

“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 regulated 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.”
 

 

Other treatments and 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 Symptoms

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.

 

Nutritional supplements. Doctors might run tests to see if 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.

 

Alternative Therapies might also include Meditation and trying 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

A heart rate monitor (HRM) is useful because not all ME patients can manage a 2-day exercise test (CPET).

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.

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.

 

• Here is a link to an introduction to pacing using a heart rate monitor for ME patients by Leela Play

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

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

 

• Using a Pulse Oximeter and Heart Rate Monitor, information here

• HR Monitor Facebook Group 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 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

 

 

 

From the International Consensus Primer (ICP) 2012

Personalised Management & Treatment guide starting on page 13 of the ICP is suitable for collaborating with a medic and planning your treatments and management. The rest of the materials in the primer are specific to those who have ME.

International Consensus Primer (ICP) 2012

 

 

Other Resources

This 2 pg Dr. Handout 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 International with tips organized by symptom Here

 

From Dialogues for a Neglected Illness on Pacing

 

Pacing Guide from New Zealand group ME Awareness NZ

 

Finding your Energy Envelope from ME/CFS Fibromyalgia Group

 

Vitamins and Electrolytes information by Colleen Steckel here

Summary

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

 

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.

 

 

 

"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."

 

 

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