Good news in ME research is like buses – none for decades, then lots at once. On Friday the news broke: a study has been published by some of the best names in worldwide ME research that could provide the start of a biomarker for ME. Even more remarkably, the UK Press picked up the story. Usually, the UK papers are quick to print stories that claim ME is a psychiatric condition cured by exercise, but slow to pick up stories that indicate it is a physical illness.
In the world of ME research, there are two sides:
- Side A believes ME/CFS to be a serious neurological/autoimmune illness, of physical and organic origin (like epilepsy or Parkinsons’s). Rest and pacing is the best way of managing it, and exercise can be dangerous.
- Side B does not believe ME exists as a neurological illness. Instead they think patients suffer from a functional or somatisation disorder, where the symptoms arise from stress or ‘exercise phobia’ (like phobias or rare psychiatric illnesses). They believe that Graded Exercise Therapy and Cognitive Behavioural Therapy are the most appropriate treatments.
The credibility of Side B would fall entirely if a biomarker could be found, so this is huge news.
Essentially the deal is this: they analysed the blood of c. 300 ME patients vs 350 healthy controls. They discovered that for those who had had the illness for under three years, certain cytokines (blood proteins) were noticeably elevated (indicating inflammation) but after three years, the cytokines were below the levels of healthy controls (perhaps indicating immune exhaustion). Unusual cytokine levels have been observed for years in patients with ME for those who cared to investigate along these lines, but this is the first major study on this and, as far as I know, the first study that has examined the physiological differences between the ‘newbie’ ME patients (less than three years) and the long-termers.
This discovery is significant for four reasons:
- Evidence that Myalgic Encephalomyelitis is a physical, organic disease. There is still a powerful minority of ME researchers who don’t believe that ME exists as a neurological/autoimmune condition, instead thinking that the symptoms are indicative of a somatisation disorder or stress-related exhaustion. There are many biological abnormalities noted with ME patients, but they don’t show up in regular bloodwork, and because we haven’t yet pinned down a definitive biomarker, they remain unconvinced. Their argument essentially confuses an absence of evidence with evidence of absence. This is the first systematic study that has found something that could potentially be a biomarker.
- Potential early diagnosis. If these cytokines are unique to ME, then patients could be diagnosed early, in the first three years of the illness, and could get treatment much earlier. Some patients aren’t diagnosed until they’ve had the illness for over a decade. Early diagnosis makes for early treatment.
- Potential avenue for treatment. A number of researchers are producing studies indicating that inflammation is a key aspect of Myalgic Encephalomyelitis.
- Potential justification to keep the name. “Encephalomyelitis” means inflammation of the brain and spinal cord, but certain psychiatrists have protested that there isn’t evidence for this, and prefer to call it ‘Chronic Fatigue Syndrome.” If inflammation is indicated, there seems no reason not to accept the historical name for the illness, and not the trivialising term ‘Chronic Fatigue Syndrome’.
Reaction in the UK Press has been cautious, to say the least. There are some good reasons for this: although the study is large, it needs to be replicated on an even larger scale to check that the cytokine increase is not coincidental, and it would be good to compare ME patients not only with healthy controls, but those with other illnesses, to ensure it is a biomarker unique to ME.
However, as Claudia Gillberg has pointed out, the papers did not show such caution when reporting the controversial and widely-criticised PACE trial, and the headlines in January reported flimsy hypothesis as fact. Why is this? Perhaps it’s because of the bias of the British Science Media Centre (SMC), which provides quotes for the UK Press to use on medical stories. There are seven quotes on there, mainly from psychiatrists, all of them critical, from the ‘Side B’ school of thought (and check out the declared interests!). If that’s the only place a pressurised journalist goes to get information about ME, it will be very skewed.
This in itself is an indication that nothing will change very fast in the world of ME: there are a number of powerful people with a lot to lose if we can show unequivocal evidence that ME is a neurological illness, and my guess is that they will continue to try to cast doubt on whatever is found. No one is without bias: scientists included.
All the same, this is a time for celebration: ME is in the news in the UK, and it is due to a study which seems to indicate ‘robust evidence’ that ME is a physical not ‘functional’ illness. I dare not even say it, but it could well be that greatly-elusive biomarker the ME world has been waiting for. This could be a huge breakthrough for the future of research and treatment for ME.
A round-up of the news, and how it was reported:
In the US:
- New York Times – Study on Chronic Fatigue May Help With Diagnoses. If you only read one news report, make it this one. Headline not brilliant, but David Tuller is one of the best reporters on ME there is. For this non-sciencey girl, it made it really clear.
- Wall Street Journal – More Evidence Found of Biological Basis to Chronic Fatigue Syndrome
- Health Rising – Cort Johnson (brilliant website for all ME health news) – Major study suggests ME/CFS is hit and run disorder
Papers in the UK:
- BBC news – Distinct stages to Chronic Fatigue Syndrome identified.
- The Independent – Chronic Fatigue Syndrome: Scientists now have ‘robust’ evidence that points to biological cause. Interestingly, when it was first published its headline read: “Scientists Claim to have ‘Robust’ Evidence that ME has a Biological Cause” – they seem to have changed it since.
- The Daily Mail (with a disappointing headline containing the term ‘yuppie flu’). ‘Yuppie flu’ is an outdated label that both stigmatises and misleads (contrary to public opinion, there is a higher prevalence of ME/Chronic Fatigue Syndrome in Nigeria, for example, than in the US). Despite the scientific evidence to the contrary, many people still view those with ME as those with middle class angst, and gives rise to the kinds of quips still directed at ME patients: “if you were in the jungle in Africa, you wouldn’t have the luxury of staying in bed all day. You’d have to get on with it then.” It makes me wonder, would papers report research news on M.S. using the tagline ‘once known as hysterical paralysis’? Or research news on epilepsy with the tagline, ‘once suspected to be demon possession’?
- The Telegraph – First biological proof that ME is real found by scientists (which regrettably also brings up the term ‘yuppie flu’. Anyone want to complain to the editor?)
From the researchers themselves:
- Press Release and article from the researchers themselves, with a video by Mady Hornig.
- For any science or research fans, the full paper is published here
(For those who are new to my website, typically I write on the spirituality of suffering and the messiness of life, but as I suffer from ME I really had to write on the latest shake-up in the ME world!)
A promising development but what concerns me is the possibility that the psychiatric lobby will be able to interpret this as evidence that those of us who have been ill for longer than 3 years (and therefore do not have raised cytokines) do indeed just need CBT and GET to recover our lost conditioning and cure our supposed false illness beliefs. Isn’t that likely?
I think this is a depressing possibility, because people will always interpret the evidence to their story. But it is worth noting that the cyokine levels in long-term ME people are still different from healthy people. There must come a tipping point where all the bleated ‘yes, but those physical signs, those blood tests, those cytokine levels, those cortisol levels aren’t significant enough to represent a physical illness’ start to sound like special pleading, and other rational people will say, ‘if it looks like a duck, quacks like a duck, perhaps it really is a duck’. (if that makes sense!) And, of course, this raises other areas of investigation. If they find a virus, it’s pretty much game over for the psychs. Of course they can say ‘a virus kicked it off, but now it’s just psychological’, but there’s only so long they can say that for when in the past they’ve scorned at the idea of their being a virus behind it. We have records. The longer they change their story, the weaker it sounds.
Excellent, really helpful, thank you. A day of few words.
Thank you so much for taking the time and energy to comment – much appreciated.
This is potentially great news for people with ME. It couldn’s have been clearer to us that our son had a physical illness, and fortunately both our GP and the paediatrics dept agreed with us. A referral to child mental health services – which we were told was to support him through chronic illness – was a frustrating and threatening experience, with him being re-diagnosed from scratch as having a psychological disorder which should be treated behaviourally. Eg his sleep reversal was to be treated by putting him to bed at 5.00 pm and leaving him there till he fell asleep and his tiredness was to be treated by ‘graded exercise’.
Anything that supports patients and their families in treating this as first and foremost a physical illness would hopefully cut down such worrying interventions.
Pam – it is both depressing and comforting to read your story. Depressing because the mental health services treated your son so badly (and this is now the standard ‘treatment’ for anyone with ME) but comforting to know that I’m not the only one, and that there are doctors around who know that it is a physical illness. It’s so frustrating that the PR campaign by this small group of psychiatrists has been so devastatingly effective. Thanks for the solidarity, friend.
celebrating good news with you!
Thank you for celebrating with me!
This is great to hear. I love your line….”Their argument essentially confuses an absence of evidence with evidence of absence.” Brilliant thought there Tanya. I am going to write that down and keep it.
Thank you! But I can’t claim credit for it. I have read it cited by a few other ME campaigners – I think Angela Kennedy and Jen Brea have both mentioned it. I find it really helpful, too.
Psychiatrists have a monetarily vested interest in keeping the disease under psychiatry.
Yup! They really do. So do insurance companies (those who pay out only 2 years for mental health conditions, but indefinitely for non-mental health conditions). It’s interesting to see how often the psychiatrists have jobs on the side working for insurance companies.
Oh, how I hope and pray that good things will come from this!
Me too, friend. Me too.
Wow this is amazing and i for all people with ME that even if this isn’t really anything (even though I’m praying it is) that it opens doors to new research and that people with ME are acknowledged.
Thanks for cheering with us, Lulu!