By David Tuller, DrPH
Note: The DecodeME team held a Facebook Q-and-A this week. If you want more information about the study, you can watch the video here.
Two major UK government funding agencies recently announced grants totalling £3.2 million to support a major genetics study of ME. Whatever the long-term findings of DecodeME, spearheaded by the CFS/ME Research Collaborative and the CureME Biobank at the London School of Hygiene and Tropical Medicine, the immediate results were impressive—the kind of fair and thoughtful news coverage that has been sparse in this domain of science, especially in the UK. In particular, The Times (the UK version, that is; to a New Yorker, there is only the other Times) published a package of six stories over two days–June 23-24–that took the issue and the illness seriously.
Tom Whipple, an excellent science reporter at The Times (his book about sex, X and WHY, is informative and entertaining), has previously written several articles about key news events in the long-running PACE saga. These have included the publication of the special issue of Journal of Health Psychology, the publication of the PACE reanalysis paper, and my open letter to Lancet editor Richard Horton about the trial’s “unacceptable methodological lapses,” which was co-signed by more than 100 experts and more than 70 patient and advocacy organizations.
So The Times’ interest in the DecodeME developments didn’t really surprise me. However, given the extraordinary circumstances within which we’re now all existing, many important news events not directly related to the pandemic do not receive the coverage they deserve. Despite current pressures, The Times made the welcome decision to invest the time needed to produce this cluster of articles. Most of them were written by reporter Sean O’Neill, with Whipple contributing a short summary of the struggle between the PACE proponents and others over research and treatments.
Coverage of this illness in the UK has long been marred by aggressive efforts to portray criticism of the PACE-style treatment paradigm as irrational and driven by anti-science zealots. This narrative is as credible as President Trump’s portrayal of largely peaceful crowds protesting racial injustice as howling mobs of anarchists out to destroy America. The PACE enablers at the UK’s Science Media Centre played a central role in disseminating this dishonest and harmful narrative, which gained traction after The Lancet published the first PACE results in 2011.
The UK press has repeatedly advanced this defamatory meme without subjecting it to robust scrutiny, or any scrutiny at all. Maybe that’s starting to change.
For one thing, it seems that DecodeME has successfully managed, at least for now, to rechristen the disease as myalgic encephalomyelitis—what it was called, for better or worse, before the US Centers for Disease Control and Prevention slapped it with the name everyone despises. (Everyone, that is, outside the precincts of the psychology and psychiatry departments of a few Russell Group universities.)
In The Times, the main headline on the first day was “Search for genetic clues of ME.” ME was referenced throughout, with the other name mentioned only in passing in Whipple’s backgrounder. The awkward hybrid ME/CFS was absent. (I saw images of the newspaper pages; the headlines in the online versions did use chronic fatigue syndrome.)
Second, the Times’ package of stories did not include any pompous or self-serving quotes from the PACE authors, Sir Simon and other pooh-bahs of the UK’s medical establishment, and the gang of sycophants at the Science Media Centre. That could be a sign of something—perhaps that the debate is finally moving beyond the limits imposed by the intellectually bankrupt and scientifically discredited CBT/GET treatment paradigm.
The lead piece on the first day of coverage involved the study itself. After mentioning the “toxic debate” over the illness, it included this key passage about the current context:
“Attitudes to the illness are, however, shifting. The National Institute for Health and Care Excellence is reviewing how the NHS should treat ME after criticism over previous recommendations that patients receive therapy and graded exercise. Its new treatment guidelines are due in December…The Centers for Disease Control and Prevention, the US public health agency, stated in 2018 that ME was ‘a biological illness, not a psychological disorder’ and patients were ‘neither malingering nor seeking secondary gain.’”
The piece also appropriately noted that questions about the biological basis of the illness are highly relevant in the pandemic era, pointing out that the project is being launched “as people struggling to recover from coronavirus show similar symptoms to ME sufferers.” Indeed, while the planning for DecodeME has been underway for a long time, it would not be surprising if the very evident surge in post-covid patients experiencing persistent symptoms helped bolster the argument for this major investment in biomedical ME research.
This story was accompanied by a sympathetic piece describing the experiences and challenges of three patients. One of them, Danny, is the teenage son of Action For ME executive director Sonya Chowdhury, who has been a key player in pulling the project together. Another, Nina Muirhead, is a dermatological surgeon who was seriously disabled by the illness. According to the story, “Dr Muirhead learnt nothing about ME when she was a medical student and was dismissive of the condition after qualifying.” She now advocates for better medical education about the illness.
Families facing custody threats
The stories on the second day were about the terrifying threats faced by families when parents are accused of fabricated or induced illness, or FII—what used to be called Munchausen-by-proxy. Here’s the stark opening statement of the lead article: “Hundreds of families whose children suffer from the debilitating condition ME have faced child protection investigations in the past decade, The Times has learnt.”
(I would quibble with the news organization’s need to insert the phrase “The Times has learnt”—as if this information were newly available or as if The Times had gone to great lengths to uncover it. Any major news organization could have ‘learnt’ about these horrors a long time ago, and some have reported on them. But that’s a minor quibble; I’m a former newspaper reporter, so I understand why that phrase is there. Overall, this is an excellent package.)
This main article was accompanied by two harrowing case studies. The material included the necessary perfunctory statements from the Royal College of Paediatrics and Child Health as well as the Association of Directors of Children’s Services. But the weight of the argument was on the side of the parents alleging mistreatment and unwarranted accusations from social services and having to live in fear of being stripped of custody.
Overall, the two days of stories included no anecdotes of patients engaging in purported harassment of eminent researchers. In contrast to some UK investigators of non-pharmacological treatments, the DecodeME scientists do not appear to be criticizing and insulting patients publicly. That positive framing could be interpreted as a sign that the strenuous attempts by the Science Media Centre and the PACE cabal to cast the patient community as a bunch of Flat-Earthers and hysterics could be losing its potency.
Time will tell what results the DecodeME research will yield, and if those results will lead to real advancements in understanding of the mechanisms of illness. But the fact that top UK government funders have endorsed this biomedical approach suggests that the rehabilitative strategy no longer has a monopoly on funding devoted to this illness. (It is worth noting, however, that this investment still represents much less than the amount spent on PACE, without even considering inflation.)
The NHS and UK academic and medical establishments have for decades treated and regarded chronic fatigue syndrome as a complaint requiring psychological treatment. Perhaps the announcement of these grants for bonafide biomedical research will prompt other funders, in the UK and elsewhere, to reconsider their own portfolios in this domain. And hopefully other news organizations will follow The Times’ lead and set aside their preconceptions based on pronouncements from investigators who peddle nonsense like PACE.
8 responses to “Excellent News Coverage of UK Genetics Study in The Times”
Wonderful summary David, thank you as ever for your tireless work.
In my opinion, members of the Royal College of Paediatrics and Child Health (RCPCH) and/or Paediatric Mental Health Association (PMHA) and/or Royal College of Psychiatrists (RCPsych) should be investigated and held to account for giving a lowish rate of 4 to 10% for (adult) MUS misdiagnosis in their 2018 ‘MEDICALLY UNEXPLAINED SYMPTOMS (MUS) IN CHILDREN AND YOUNG PEOPLE’ guidance. They were informed in November 2018 that there are higher misdiagnosis rates in the literature (Nimnuan et al 2000*) but they didn’t amend their guidance. [* as described more recently in this article -https://opposingmega.wordpress.com/2020/05/01/untangling-the-mus-web/ ]. They include the Nimnuan et al 2001 paper, (which reports on the same study as Nimnuan et al 2000), in the guidance bibliography, so it seems that they are happy to use the study to support their argument but will ignore its high MUS misdiagnosis rates when it suits them. The information they provide in their guidance could lull paediatricians and other doctors into a false sense of security when ‘diagnosing’ MUS in children because the MUS misdiagnosis rate could be much higher in reality, but they don’t appear to care. NB In the guidance they omit to explain that the MUS misdiagnosis rate provided was for adult neurology only. I assume that there is no MUS misdiagnosis rate available for children – why not? Doesn’t that reflect a failure by the NHS and leading child health organizations and/or research bodies to adequately protect children?
Further to CT’s observations maybe the Times might like to report on the antics of the people involved in creating the MUS paediatric guidance? Now there’s a thought!
Wrt the other coverage of DecodeME… in a way it matters not how cheery The Times presents DecodeME if the diagnostic criteria for its cohort is SEID which is very problematical as I’ve noted before in another comment on another blog, “.. the IOM definition is so inclusive that, whilst it draws in people with ME, it has such big holes in its net that it also draws in people who have all sorts of other maladies which aren’t ME””. So I can’t honestly get as excited about this as others seem to be doing.
It would be good if the full results of the Decode ME study were going to be publicly available, but from listening to the Q&A session it seems that they won’t be, (but they will be made available for other researchers to use). I don’t understand why they can’t be made public when all the data will be anonymized. I suspect that by using a broader definition any significant spikes in the results are more likely to be related to conditions like Ehlers Danlos syndrome which may have a higher rate in a broader range of sufferers but may not be the true cause of ‘ME’. I think it’s possible that the spikes which don’t quite make it to significance, which may have done so under a tighter definition, may be the ones of interest, but it seems that we’ll never get to find out where they are located and what they correspond to.
Having said that, I hope that enough participants come forward to produce some positive results and I’ll be interested to see what the study yields.
They didn’t just slap the CFS name on it. They changed the symptoms to suit the ‘fatigue’ criteria. The list of symptoms for CFS are vague & support fatigue syndrome. Myalgic Encephalomyelitis presents actual brain/spine inflammation and a myriad of organ dysfunction. Fatigue is the least of our concerns. It doesn’t help that researchers are using a hybrid criteria Fukuda/CCC/IOM because of the 3 the Fukuda is the only criteria written for research. The other 2 are for clinical diagnosis only. In fact Dr Carruthers et el’ requested that the ICC & ICPrimer be used for both diagnostic & research and to void the CCC. How many patients realize that an author of the PACE Trial Study is also an author of the CFS Fukuda Criteria that is constantly being used in research studies resulting in inconclusive results since 1994. Perhaps it’s time to remove ME from under PVFS and placed in a classification that supports ‘Encephalomyelitis’. The symptoms included in CFS are not the same as the symptoms in ME. ME can be proven using SPECT Scans, Viral Testing, Tilt Test & 2 day CPET.
With respect to patients in the DecodeME study needing to have a clinical diagnosis of ME, this is meaningless. UK doctors in both primary and secondary care have repeatedly tried to pin a ME diagnosis on me. I refused to accept the diagnosis each time because there was no evidence that it fitted my symptoms and they didn’t exclude other possible causes. However, I think a lot of people who don’t have a good background knowledge of ME would accept the diagnosis in order to get validation and support. Doctors repeatedly use ME or CFS as a waste-bin diagnosis for medically unexplained symptoms, so the UK and her husband could get through the first stage of the DecodeME screening process. Perhaps the researchers don’t realize how bad the situation in the UK is.
ME is not an entity in its own right. It is misdiagnosed hypothyroidism. You just need to trial and error the amount your body needs. The TSH tests are only normal for healthy people in a 95% population area. 5% of people lie outside the TSH reference interval. Patients with ME/CFS/PVFS just need to rectify their hormone deficiencies which is what ME/CFS/PVFS really is. The Glaswegian Dr Gordon Skinner has said this all along. You can read the hundreds of PWME he brought back to life after giving them the correct dose of T4 and T3 that they needed and sometime B12. Good luck next time you see your MD or GP. Glaswegians are clever little people.
Maybe less comprehensive, but not paywalled, the proposed study also got a supportive write-up in the Guardian.