Written by ‘M.D.', the nom de guerre of Dr Phil Hammond
MD's greatest regret as a junior doctor was not to take the time to understand ME (myalgic encephalopathy). As a result, MD was infected with the same prejudices as many of his peers, namely that ME was largely psychological, and an illness of the middle classes (“yuppie flu”).
Both Beliefs are entirely wrong and have caused huge distress and damage to those with ME. Medicine has particularly failed those with severe ME, many of whom have lived for decades with a very disabling disease and the enduring sleight that it's “all in the mind” or due to “faulty beliefs”. Although ample evidence exists of biological abnormalities in patients with ME, we are still some way from definitive pathological tests and effective drug treatments.
ME is often used synonymously with chronic fatigue syndrome (CFS) but the illness is far more than fatigue. MD's view – working in an NHS clinic for young people with chronic fatigue – is that “CFS/ME” is a cluster of disorders which centre not just on severe, disabling fatigue but on post-exertional malaise (PEM), This means that previously very active patients can suddenly crash after physical or cognitive activity, which completely wipes them out for at least 24 hours and often much longer, with multiple unpleasant symptoms. Anyone who has lived through or observed such crashes is left in no doubt that the disease isn't psychological.
CFS/ME is often – but not always – triggered by a viral infection. Nausea, severe pain, headaches, sensitivity to light, sound and touch, cognitive dysfunction and dizziness caused by faulty blood pressure control (orthostatic intolerance) are common. Patients also suffer poor and unrefreshing sleep, waking up feeling utterly exhausted. A high reduction in energy is accompanied by an inevitable reduction in previous levels of activity. In young people CFS/ME is the commonest cause of long-term school absence, and the threat of legal action for poor attendance is all too common.
In 2013, the US Institute of Medicine reviewed more than 9,000 research articles and concluded that ME has a biological basis and is a “serious, chronic, complex systemic disease” characterised by neuro-immune abnormalities causing patients to be severely intolerant to exertion. Other studies have shown abnormalities in cellular metabolism, gut bacteria and gene expression in some patients.
The ME Association's Christmas Appeal is raising funds to analyse 300 blood samples from a CFS/ME biobank, looking at metabolomics – chemical clues that are left behind after changes in cells – picking up on research from the University of California which suggested that CFS/ME could be the body going into a state of semi-hibernation.
Many other examples of innovative research were present at the recent International Association for CFS/ME conference in Fort Lauderdale, with chronic inflammation a recurring theme. But even the hard core researchers admit it could be years before we have definitive tests and effective drug treatments. Funding for further trials is needed.
The challenge in the meantime is how to help the 250,000 CFS/ME patients in the UK who need it now. Non-pharmacological approaches to CFS/ME include trying to establish a regular sleep pattern and to manage activity levels to avoid booming and busting, and the horrible payback of post-exertional malaise. This can be hard to do, but in MD's experience many young people who have recovered enough to engage in a managed activity programme do very well, probably because stabilising sleep and managing activity levels affect metabolism and hormone levels, such as cortisol. Cognitive behavioural therapy can help establish these recovery routines and manage anxiety, but isn't itself a cure. Many recover in time by gradually increasing activities when they feel able. Some get recurrences.
Other patients are simply unable to increase activity and exercise levels, and some are made worse by trying. All interventions – drug or non-drug – can cause harm as well as benefit, and there are a significant number of patients with severe CFS/ME who are not helped by any current interventions. Research needs to focus on those most severely affected, and we all need to focus on believing in ME. It is a proven and classified neuro-iimune disorder, from which some people recover and some don't. Yet.
M.D.
Dear Dr Phil Hammond,
Thank you for taking the time to write this article about ME. I think I can safely say it’s the best article I have ever seen written by someone working among the psychosocial school of researchers. And the first time that I can ever remember that anyone from that school has mentioned any of the extensive biomedical research being conducted on ME. If this is a genuine effort to help the beleaguered ME population then I applaud you for doing so and offer my heartfelt thanks.
For all the good things you have said in the article I do hope though, that this is not just another ploy to promote the FITNET study, because although you work in the same clinic as Esther Crawely your stance in this article (very welcome though it is) is completely at odds with Esther and also bears no relationship to the stance she is taking in the protocol for FITNET, in fact there is a yawning gulf between the two. The FITNET study says an awful lot about increasing activity and has a ludicrous goal which is: “Participants will be encouraged to increase activity until they are able to do up to 8 hours of activity a day”
Please go to page 13 of the FITNET protocol 4.6 interventions
http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0007/170962/PRO-14-192-109.pdf
The protocol you use in your clinic for children with ME, described elsewhere, is also at odds with the aggressive protocol published for FITNET and that has to be a worry if you’re using a protocol much like Pacing as used by most patients, yet claiming its CBT/GET. Surely this is corrupting science and it’s also promoting the perception of ME as a psychosocial illness that can be treated with CBT/GET. You mention in your article: “MD’s greatest regret as a junior doctor was not to take the time to understand ME (myalgic encephalopathy). As a result, MD was infected with the same prejudices as many of his peers, namely that ME was largely psychological, and an illness of the middle classes (“yuppie flu”). Both Beliefs are entirely wrong and have caused huge distress and damage to those with ME. Medicine has particularly failed those with severe ME, many of whom have lived for decades with a very disabling disease and the enduring sleight that it’s “all in the mind” or due to “faulty beliefs”. This is a situation not caused by “Medicine” as you say but by the beliefs propagated by the psychosocial school of thought in the UK of which Esther is a very active member.
All of Esther’s research so far has done nothing to help the situation for ME sufferers and in fact it has made it so much worse. Her track record is so shockingly bad, for instance; Inflating the numbers of Children with ME to nearly one in every class by conflating general fatigue with ME/CFS and using appallingly bad quality research. The SMILE Trial on the Lightning Process (a quack, pyramid, commercial program) that has no place in proper research or treatments, MAGENTA and FITNET are both mini PACE Trials following on from a trial (and a small Dutch study that found no effect) that has been discredited round the world and slammed as fraudulent.
I hope you will consider carefully what I have written; you see my three children were struck down with severe ME in the 80s. I was 38 at the time I am now 66 and still caring for them. When you are lying awake at night hearing your 34 year old daughter wailing in despair and distress it concentrates the mind and you have a great desire for the truth to be known. I hope to see this awful disease accepted and acknowledged in its rightful place with biomedical tests, proper treatments and care for patients before I am too old to support them any longer.
I hope you don’t mind if finally I mention two points;
There seems to be some confusion about 24 hour Post Exertional Malaise, it doesn’t mean fatigue for 24 hours after too much effort. It’s the delay time before the Post Exertional Malaise (recurrence and exacerbation of neurological and physical symptoms) sets in, it can be 24 hours or even 48 hours before it sets in and then it can last for days, weeks or months depending on how ill the patient is.
ME is not a mix of different illnesses or conditions, ME is a distinct well defined disease typified by post exertional malaise and many neurological and physical signs. CFS on the other hand is a mixed bag of fatiguing conditions, patients with just fatigue, and ME patients.
Thank you if yu have seen this and read it.
I concur with much of what Mayfly is saying. I applaud and appreciate Dr Phi Hammond’s article hugely, and it is very well written. He has clearly listened to patients’ feedback after a recent radio prog in which he interviewed Esther Crawley about her FITNET trial. And given the context of his article, a column in Private Eye, he has done well to get some crucial points across. I just wish more doctors were expressing these views in mainstream media and medical journals. Of course, PACE is the elephant in the room – CBT/GET as enshrined by PACE are potentially very harmful therapies as they are designed to dissuade sufferers from thinking they actually have a neuroimmune illness. Pacing, on the other hand, is a very different thing and is how ME sufferers survive ME. That is a fact. Mayfly is correct to point out the crucial difference between ME and a ragbag of fatiguing conditions, which worryingly Esther Crawley has failed to do. And Esther as we all know thinks PACE is a ‘great, great trial’, another reason ME sufferers find it nigh impossible to trust any future research she is involved in. But I say again, Dr Hammond’s article, while necessarily ‘simplistic’ in some ways – it is not an article in a medical journal – was hugely welcome to me. He strikes me as human and caring, ready to admit medicine is not infallible. The PACE doctors who stubbornly cling to their ideology could learn much from him.