Information for Healthcare Professionals

This 3-minute video provides a fantastic introduction to ME/CFS:

ME and PEM https://www.youtube.com/watch?v=TGIo1v7KVJQ

Why everything you know about ME/CFS may be wrong

Unfortunately, the 2007 NICE guidelines on CFS/ME (as it was then called) provided overly-broad diagnostic criteria. Only one symptom was required for diagnosis: chronic fatigue. This caused problems because chronic fatigue is a very common symptom which is found in any number of illnesses, from cancer to viral infections to depression. It’s also found in people who aren’t sick at all, but who simply work too hard and don’t get enough sleep! Your past clinical experience of ME/CFS may have included all these very different types of patients.

The 2021 NICE guideline requires four symptoms for diagnosis: post-exertional malaise (PEM), also known as post-exertional symptom exacerbation, fatigue, unrefreshing sleep, and cognitive problems. While three of these symptoms may be found in any number of conditions, PEM is unique, and has a unique and measurable underlying disease process.

Resources providing general information on ME/CFS for clinicians

These all cover similar material, so just pick one. If you’d like us to pick for you go with the Mayo one; it’s brief, clear, practical, and has nice graphics.

Four Tips for Suspecting ME/CFS

ME/CFS is a common and very serious chronic illness. Prompt diagnosis gives the patient a chance to learn pacing, a type of illness management unique to ME/CFS which avoids relapse and may give the best possible chance at recovery. Yet most patients wait months or years for diagnosis, to the detriment of their health.

The most common presenting complaints are fatigue and pain. These symptoms are very common in the population generally and could point to any number of conditions, so it can be difficult for primary care physicians to know when they should consider ME/CFS. However when we look more closely, ME/CFS has a distinct pattern which clinicians can recognize. Here are four tips for recognizing ME/CFS:

  1. Loss of function

People who have newly developed ME/CFS are usually frustrated that they can no longer do their usual activities. They may complain that they can’t do their sports or exercise anymore. They may struggle to keep up with their work; it’s common for people to say that they’ve taken to catching up on work on the weekends, or even that they took leave just to catch up on work. Some manage to keep up with work or school by cutting out all social activities and hobbies. A patient may say that they are alright during the work day but that as soon as they get home they collapse on the sofa and stay there for the rest of the evening.

The loss of function is often fluctuating and apparently unpredictable; a person might be able to do a task just fine one day, but be completely unable to do it the next.

  1. Hours of upright activity

Ask your patient how many hours they spend per day with their feet on the floor. Healthy people of working age tend to spend 14 to 16 hours per day upright, that is to say sitting or standing with their feet on the floor. For people with ME/CFS that number can be much lower; for those with very severe ME/CFS it can go all the way down zero.

  1. The dream scenario

“What would you do if your illness suddenly disappeared?” This question can help distinguish ME/CFS from depression. People with depression tend to struggle to think of an answer, while people with ME/CFS tend to have no trouble answering.

  1. A large number of symptoms

ME/CFS is a complex, multisystem illness; a large number of multisystem symptoms is a clue that points to ME/CFS.

Patients often have no idea that their symptoms are related, and they may only mention the one or two symptoms they find the most troubling to a doctor, so it can help to ask the patient if they are experiencing any other problems in addition to the ones they presented with.

According to NICE, the main symptoms of ME/CFS are debilitating fatigue that is not relieved by rest, post-exertional malaise after activity, unrefreshing sleep, and cognitive difficulties. Other symptoms may include: orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position, temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold; neuromuscular symptoms, including twitching and myoclonic jerks; flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches; intolerance to alcohol, or to certain foods and chemicals, heightened sensory sensitivities, including to light, sound, touch, taste and smell; pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.

Onset

People can get ME/CFS at any age. The peak incidence is in the early thirties, with a smaller peak in the teens. Some people can tell you the exact day they got ill with ME/CFS, but for others the onset is gradual. Many patients get ME/CFS following a viral infection, and less often following a trauma such as a car accident or surgery. Women are about four times as likely as men to get ME/CFS.

Post-exertional malaise (PEM)

Post-exertional malaise (PEM), also known as post-exertional symptom exacerbation (PESE) is the defining symptom of ME/CFS. PEM is unique to ME/CFS and is not found in any other condition (it could be argued that long Covid is an exception, but I would argue that those long Covid patients who experience PEM should be diagnosed with ME/CFS as well.)

NICE defines PEM as: “The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse.”

PEM is very often misunderstood. It is not fatigue, and it is unlike anything that healthy people experience. It is best understood as a very specific type of relapse. ME/CFS is a disease characterised by intolerance to exertion, and PEM is the form that intolerance takes.

The amount of exertion that triggers PEM varies from patient to patient. For a patient with mild ME/CFS it might be a 30 minute walk, for a person with severe ME/CFS it might be looking at a screen for five minutes. Exertion can be anything from exercise, to reading or talking or listening to a podcast, to being exposed to too much light and sound.

Pacing

Pacing, rather than incremental increases in activity, is key to helping patients with M.E. cope and make the best if their lives. It isn’t a cure but it’s an important management tool.

M.E. Action has some excellent guides including for patients, clinicians and children.

Hospitals and severe ME/CFS

Clinicians working in hospitals should be aware that patients with ME/CFS, especially severe or very severe ME/CFS:

  • Have sensitivities to light, sound, or chemicals. Normal lighting or normal speaking voices may cause excruciating pain lasting for hours and provoke relapse.
  • Have profound cognitive problems which make communication difficult.
  • Clinicians should work with the patient’s family/carer who will know how best to communicate with them and how to avoid provoking deterioration.
  • Need a private room.
  • A person coming into the room can be enough to provoke deterioration.
  • A nurse or doctor performing routine tests can provoke deterioration.
  • Should have a named clinician who coordinates their care.
  • Should not come in through A&E; hospital stays should be planned in advance.
  • Often have orthostatic intolerance and need to lay flat; in some patients even being tilted up 30 degrees will provoke a relapse.
  • Are at risk of malnutrition as they can become too weak to chew or swallow food, or in some cases due to gastrointestinal problems. Appropriate nutritional support should be provided as needed.

Resources on severe ME/CFS

⚬Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Montoya JG, Dowell TG, Mooney AE, Dimmock ME, Chu L. Healthcare (Basel). 2021 Oct 6;9(10):1331. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443/

 ⚬Life-Threatening Malnutrition in Very Severe ME/CFS. Baxter H, Speight N, Weir W. Healthcare. 2021; 9(4):459. https://www.mdpi.com/2227-9032/9/4/459

Information for physiotherapists

When it comes to ME/CFS, everything you know about the human body and exercise is wrong. Exercise – even mild exercise – can make your patients sicker. Physical activity will not cause their muscles to become stronger or their cardiovascular system to become more efficient; in fact it could provoke a relapse. People with ME/CFS cannot increase their activity level by 10% per week, or by any other arbitrary amount. For more information see: 

– Physios for M.E. https://www.physiosforme.com/

They have written a book for physios that you can buy from the M.E. Association.

– Long Covid Physio https://longcovid.physio/

Information for those who teach illness management / pacing (occupational therapists)

⚬Coming soon!