I’ve had ME for over two decades and this Guide is based on my personal experience. It will not be based on the NICE guidelines or current medical thinking because they’re wrong. As a result it may seem controversial. However, ME is well versed in controversy being one of the most fought over diseases of the modern age.
ME is not a new disease. It is thought both Charles Darwin and Florence Nightingale had ME although it was called ‘neurasthenia’ in Victorian times. It seems more common now, and probably is, because immune diseases in general are more common – allergies, for example, have exploded in recent times.
I’m not going to re-invent the wheel so will point you to this article written by respected ME pediatrician Nigel Speight which briefly outlines the history and controversy of ME.
ME has remained contentious for the simple fact that no diagnostic test can currently prove a person has ME, and many of the symptoms are seen in other diseases.
ME is thought to be a primary disease of the central nervous system, which affects other systems like the immune system. I disagree. I think it’s primarily a disease of the immune system, which affects other systems like the nervous system. See my Canary Post and Canary Q&A for more information.
CFS v ME
Over the years, various terms and diagnostic criteria have been used to define ME. In the 2000s the diagnostic criteria for ME was broadened and attempts were made to abolish the term ME and replace it with CFS. This name change was vigorously opposed by the ME population, who quite rightly said the term “chronic fatigue syndrome” didn’t describe their illness experience and that not everyone with chronic fatigue had ME. An uneasy truce was called and most health care professionals now refer to ME as ME/CFS. I have never used the term CFS to describe my illness nor will I ever. I have ME, end of.
So, are ME and CFS one disease? IMHO no. Some people are diagnosed with ME/CFS when they have ME. Some people are diagnosed with ME/CFS when they have CFS. Lumping both diseases together means neither one is being researched or treated correctly. It’s like differentiating between Angina and Cardiomyopathy – they’re both heart disease, and may present with similar symptoms, but they don’t have the same cause or need the same treatment. Same for ME and CFS.
This is what I think the diagnostic criteria for ME should be:
Acute onset, usually following a virus from which the person never fully recovers. Initially termed “post viral fatigue syndrome”. If symptoms are unresolved after 6 months, all other possibilities for symptoms are excluded (see the ME Association’s Purple Booklet for diseases to be excluded), and symptoms below are present, this should be changed to ME. So no-one gets diagnosed with ME for at least 6 months because Post Viral Fatigue Syndrome is fairly common and usually fully resolves. Only in a small percentage of cases does it develop into ME.
Just to clarify, when I say “acute onset” I don’t mean you catch a cold, go to bed and never get up again (although that does happen). The virus which led to my ME happened 18 months before I got really ill. Many people struggle on for a couple of years with increasing symptoms before finally succuming to full blown ME. But looking back, once I’d had the bug I was never the same – I never recovered from it.
- The cardinal feature of ME is chronic malaise (feeling ill), often described as “flu-like”. Made worse by either mental or physical exertion/exercise (called “post-exertional malaise”). Often delayed by 24-72 hours following exertion/exercise. If someone tells me they feel ‘tired all the time’ and asks if they might have ME I ask if they also feel ill all the time. If the answer is no they don’t have ME.
- Crushing fatigue, never before experienced and unrelieved by rest. Made worse by either mental or physical exertion/exercise.
- Previous activity levels decreased by 50% or more. Which means if you carry on in full time employment or education having a diagnosis of ME would not be possible, though a diagnosis of CFS would be possible. Told you I would be controversial 😉
- Sleep disturbances never before experienced. This can be insomnia (difficulty getting off to sleep or staying asleep) or hypersomnia (difficulty staying awake or sleeping excessively). Always waking up unrefreshed. Often a reversal of the sleep/wake cycle (sleep during the day, awake all night).
- Chronic sore throat without signs of infection.
- Brain fog and other cognitive symptoms, eg loss of short term memory, new onset dyslexia, problems with concentration.
- Flu-like aching muscles.
- Muscle weakness – inability to sit or stand for long periods.
- Sweats or chills.
- Nausea and changes in appetite.
- Dysautonomia – POTS, Orthostatic intolerance, dizziness, palpitations, fainting or feeling faint, facial palor, problems maintaining blood pressure and body temperature.
- New onset headaches and/or migraine.
- Increased thirst.
Other symptoms may include:
Increased urination, constipation or diahorrea, IBS-type symptoms, stomach pain, tremor, slurred speech, difficulty with word finding, new onset stammer, a-typical seizures, partial paralysis, pain (widespread), difficulties chewing and swallowing, new onset allergies particularly to drugs and chemicals, tinitus, TMJ disorder (jaw joint pain), intolerance to alcohol, drug sensitivities, pins & needles and/or other altered sensations, sound/light/touch sensitivity, muscle twitching, emotional lability. New viruses, eg catching a cold, will always worsen symptoms sometimes for prolonged periods.
The best guidelines we currently have on all aspects of ME are the International Consensus Primer for Medical Practitioners written in 2011, although they’re frustratingly not used by the medical profession here in the UK.
This is a vast area I don’t have the energy to go in to. For me personally no treatment has helped. I’ve spent in excess of £20,000 over the years on the weird and the wacky and it was a waste of money – see this blog post for more information.
There are 2 government backed treatments for ME, neither of which should be touched with a 10ft pole:
- CBT (cognitive behavioural therapy) which considering ME is physical, not psychological, is a waste of time. However, it can help you come to terms with being chronically ill but the minute any practitioner says it will help you get better, run for the hills.
- GET (graded exercise therapy) which made me so ill I ended up in hospital. The whole point about ME is that exercise makes you worse, much worse. It’s a bit like treating a diabetic with sugar cubes “oh go on, a little bit won’t harm you – everyone else eats sugar and it gives them energy!”
Other than that, ME isn’t treatable. If it were none of us would be sick and I certainly wouldn’t have wasted 21 years of my life stuck mainly in bed feeling like death warmed up.
My advice, for what it’s worth:
- Rest. A LOT.
- Balance rest with activities, both mental & physical (called pacing). Avoid booming and busting.
- Avoid stress.
- Eat well. Don’t drink or smoke.
- Avoid getting viruses as much as you can.
- Don’t have vaccinations unless absolutely crucial because your immune system is already not functioning properly.
- Treat pain, insomnia and other troublesome symptoms with appropriate medications.
- Get as much domestic help as is offered or you can afford.
- Make use of disability aids – never stand when you can sit, never sit when you can lie. Use a mobility scooter or wheelchair for long distances.
- Try well researched drugs. Low dose Naltrexone has been beneficial for some patients. Treating POTS can help. None are cures, but any improvement in symptoms is a bonus.
- And most importantly, don’t put new symptoms down to ME – always get them checked out by a Doctor. We can, and do, get other diseases on top of ME.
Prognosis (will I get better?)
There has been very little research carried out on recovery rates in ME. However, the bad news is that full remission is rare (between 7-20%) and the more severely affected you are the worse the prognosis becomes. The majority of people simply learn to live with varying degrees of symptoms. Some stay severely ill and some, sadly, get progressively worse. Having said all that, children appear to have a greater chance for full remission, even if severely affected – this is thought to be because the immune system in children isn’t fully developed.
Various degrees of recovery, however, are possible even after having the disease for several years – I’m testament to that 🙂 Yes I’m still ill, but I’m no longer bedbound – see my blog post on recovery here.
M.E. can be difficult to explain, so I put together a little leaflet to hand out to anyone who seems remotely interested in the disease (and those who are skeptical that there’s anything actually wrong with me!).
This is the online version, suitable to view only:
This is the printable version. Print on both sides of the paper, then fold into 3 to create a little fold out leaflet:
ME brochure print version
Tags: M.E., CFS, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Diagnosis, Symptoms, Treatment, Prognosis