By David Tuller, DrPH
The Journal of Neurology, Neurosurgery, and Psychiatry (JNNP) has finally published a cogent rapid response to its recent whine de coeur from the PACE authors and their cronies. In the commentary, the co-authors criticized eight purported “anomalies” they believe occurred during the process of developing the 2021 ME/CFS guideline from Britain’s National Institute for Health and Care Excellence (NICE). Although a number of rapid responses are known to have been sent, this is the first one JNNP has decided to share
More accurately, it’s the first except for the rapid response from MEAction UK that was shared by JNNP–and then quickly un-shared. (I wrote about that here.) In a statement, the journal attributed the decision to disappear the rapid response to “inappropriate inflammatory language” that had apparently not been inflammatory enough to prevent the initial posting. At least TheBMJ.com ran a news item about the commentary–JNNP is one of the journals under the BMJ publishing umbrella—and then published a response to the news report from Dr Charles Shepherd, medical advisor to the ME Association.
The rapid response posted by JNNP is from Dom Salisbury, who identifies himself as “an independent patient researcher,” with Robert Saunders and Professor Jonathan Edwards acknowledged as “contributors.” Here’s the opening:
“There are several shortcomings in the commentary by White et al. For brevity, this response focuses on four main points.
1. New case definition
In the past 20 years, multiple case definitions have been published that require post-exertional malaise (PEM) as a core feature of ME/CFS, such as the Canadian Consensus Criteria (CCC), International Consensus Criteria (ICC), and the Institute of Medicine (IOM) criteria. NICE’s definition is based on the latter.
These case definitions are the ones used in research and clinical practice today. White et al. refer to the 1994 criteria developed by the Centers for Disease Control and Prevention (CDC) but the CDC no longer seems to use this case definition. Instead, they advise healthcare providers to diagnose ME/CFS using the IOM criteria where PEM is a required symptom.
NICE evaluated scientific evidence for ME/CFS as it is currently defined and not for a case definition that was published nearly 30 years ago. Other reviews on ME/CFS, such as the recent one by IQWIG in Germany, have used a similar approach. (1)
It is incorrect to state that NICE “downgraded nearly thirty years of research.” The previous NICE guidance from 2007 on ME/CFS already highlighted PEM as a core feature of ME/CFS, and studies that used this description were not downgraded in the evidence review. Neither were studies that used the CCC, ICC, or IOM criteria mentioned above…”
You can read the rest here:
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The UK government’s open consultation for its “interim delivery plan” for ME/CFS
On August 9th, three UK government agencies–the Department of Health and Social Care, the Department for Education and the Department for Work and Pensions—jointly released a document called “My full reality: the interim delivery plan on ME/CFS.” Here’s the executive summary:
“This cross-government interim delivery plan on ME/CFS has been developed in close consultation with the ME/CFS community and other key stakeholders responsible for service delivery. By bringing together many key organisations at national level and people with personal experience, we have a unique opportunity to tackle the challenges facing those living with ME/CFS and their families and carers.
“The interim delivery plan was developed around 3 key themes: research, attitudes and education, and living with ME/CFS. The latter theme was then further sub-divided into topics covering children and young people, social care, health, welfare, employment and quality of life. Working groups were formed for each theme and workshops focusing on the ‘Living with ME/CFS’ topics were held to gather more evidence and views.”
In releasing this proposal, the agencies called for a period of public consultation ending October 4th in order to “inform the development of a final cross-government delivery plan on ME/CFS.” The plan appeared to take into account many of the concerns long raised by patients and advocates concerning poor treatment from the medical establishment and difficulties in accessing decent treatment and care. It received quick praise from Action For ME, which called it “a positive step forward” and “an excellent start” while adding that “much more is needed.”
The interim plan received some high-profile coverage in The Times, which slugged the article with the following headline: “NHS [National Health Service] told to stop blaming ME patients for being ill and improve care.” As part of the Times coverage, reporter Sean O’Neill recounted the 2021 death of his daughter, Maeve Boothby O’Neill, from complications related to ME:
“My daughter Maeve succumbed to ME in her teens and died, aged 27, in 2021 after the illness became severe and totally debilitating. She struggled to get doctors and social workers to understand. And for years I also found it hard to accept and understand her illness. I wanted her to try exercise programmes (then recommended as a treatment) and wondered what trauma had caused her condition. For too long I believed the medical orthodoxy, and that strained our family bond.”
(I wrote about Maeve’s life and death in April for codastory.com.)
Notwithstanding the regressive thinking represented in the recent JNNP article from those on the losing side of the NICE debate, responsible policy-makers in the UK’s public health establishment appear to be looking forward in a manner much more likely to be beneficial to patients. Perhaps the tide has turned—at least a bit.
C’mon U guys … da atoms did it (Chimera Detection – 3).
David wrote: “Perhaps the tide has turned—at least a bit.”
I wish I could be that optimistic, but I fear that this interim delivery plan is more likely to reflect cross party politicians wanting to sidestep the ME issue by paying pre-election lip service to the ME problem. I’ll know that things have really changed for good when I hear an apology from the UK Government and from those previously in positions of power who have subscribed to or gone along with the appalling psychosomatic model of healthcare that has neglected and harmed/tortured ME patients and people with other medically unexplained symptoms (mainly women) for such a long time. UK patients continue to be horrifically neglected and abused because of this model.
I see the problem in the UK getting worse, not better. I hear that ME diagnoses are being converted into FND diagnoses and that brain fog is being redefined as FCD. The terminology may be shifting – ‘MUS’ to ‘functional’ – but I believe that the result is the same and the harm is immense. Rather than being on the wane, the psychosomatic model appears to be in the ascendance and taking a greater hold on our hospitals and healthcare services as managers and commissioners are led to believe that they can save the NHS money by diverting patients to psychiatric or psychological care for all manner of medical problems. And when patients tell them that things are going badly wrong- that their health and lives are being destroyed as a result – what do they do? Diddly squat – it seems that nothing must get in the way of their cost-cutting measures. Our politicians could step in to stop this madness from destroying UK medicine, but where are they?
And will doctors’ attitudes ever change? They whine on about the effect that UK Governments have had on their lives – lack of PPE during the pandemic and their wages not keeping up with inflation – but they still seem to have the same contempt for their patients and indulge in the same anti-patient tropes. Do they have no imagination? Can’t they see that the psychosomatic model and the many harmful tropes that go with it are part and parcel of the same thing – deliberate ploys within medicine to deny patients the good healthcare that they deserve so that costs are cut and the public purse can keep lining the pockets of the rich (which is no longer them)? Sorry doctors – it looks like you’ve been had, but you’ve also been had by your overlords and are routinely neglecting and harming your patients. You really can’t expect the public to be on your side when you’re not on theirs.
It looks to me like the Journal of Neurology, Neurosurgery, and Psychiatry (JNNP) might have some correcting to do – multiple papers – in relation to the prevalence rate/position of FND.
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Whine de Coeur… Hmm. Whine du jour I understand. I’m not sure I “get” that what “Heart’s whine” means from these psychiatrists. But no matter.
Great work. So many years you have continued to do this.
With regard to the interim plan for ME/CFS, I would particularly take issue with the second sentence in the second paragraph in its introductory section about “attitudes and education of professionals”. I don’t believe that it’s accurate (medically or in any other way) to say that ME/CFS is a ‘functional disease’, nor that it is an example of ‘medically unexplained symptoms’ (MUS), given that that expression appears to have taken on all sorts of psych connotations since the psych cabal took it over. Politically, ME/CFS has repeatedly been thrown in with MUS but that doesn’t mean that it should be described as such. (Should anything now, for that matter?) The way forward shouldn’t be about disguising what doctors really think – their thinking has been wrong on this for decades. It’s their faulty thinking that has to change, not the language used. It’s that faulty thinking that creates the barriers.
If the UK government thinks it’s medically accurate that ME/CFS is functional disease then, to my mind, they are not keeping up and any plan they come up with can only fail for ME patients. Functional ‘experts’ have acknowledged that no psychological stressor can be found in 20% to 70% of people with conversion disorder/FND (-https://www.ed.ac.uk/sites/default/files/atoms/files/uoa4_ics_d_functional_neurological_disorders.pdf). The functional/conversion hypothesis has clearly been disproved so why is anyone calling anything a ‘functional disease’ anymore? All that can be said is that ME/CFS is a disease with symptoms and etiology that aren’t yet fully understood.