BMJ: Chronic fatigue syndrome and Long Covid, moving beyond the controversy, 2021, Newman

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BMJ feature: Chronic fatigue syndrome and long covid: moving beyond the controversy

Long article, which starts with fun stuff like:

“I submitted the first positive trial of cognitive behavioural therapy [CBT] as a treatment for chronic fatigue in the ’90s,” recalls Michael Sharpe, a professor of psychological medicine who was then a lecturer at Oxford University. “Next thing, my head of department got an unsigned letter, sent to The BMJ, saying that the research study was made up.”

It was the start of a lengthy campaign to prevent and undermine his research by some advocates of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) who object to suggestions that their illness has a psychological element.​

After a period of “a lot of awfulness” Sharpe moved to Edinburgh University, where he initially decided to abandon the field but was drawn back by the Pace trial.1 Pace examined the effectiveness of CBT and graded exercise therapy (GET), in which the patient does progressively more exercise over time, combined with medical care. It was always going to be controversial.

“The Medical Research Council was being lobbied, people were trying to stop participants joining the trial—we had so much flak,” he says. Published in 2011 in the Lancet, the Pace trial found that both CBT and GET led to greater improvements in some participants than medical care alone. Since then the trial has been a lightning rod for ME/CFS advocates’ anger, drawing ceaseless attacks on the conduct of the research, the researchers, and the results.​

The article goes into great detail about how BPS folks are always under fire by "some" patients who reject all psychological element and all forms of exercise. Paul Garner gets extra attention from the article: no mention of LP but that pacing didn't work for him and a recovered ME/CFS patient helped.

Garner believes that the non-specific concept of post-exertional malaise can cause patients to fear activities and overexertion. He also suggests that the malaise after exercise is normal early on but that it then becomes a learnt automatic brain response.

“I think it is really important not to emphasise post-exertional malaise as if it is a disease,” he explains. “Early on I got suckered into it as something that might never go away. Part of my recovery has been around changing my thoughts around different body signals. If you see any signal as abnormal you feel insecure or get stressed, the most minor feelings get exaggerated by your brain, and you take to your bed.”​

Charles Shepherd is also quoted though:

"We are not against exercise,” Shepherd told The BMJ. “Our view is that graded exercise can be harmful.”

In a 2019 survey of more than 2000 ME/CFS patients commissioned by the charity Forward ME,16 most patients reported worse symptoms after GET. In the National Institute for Health and Care Excellence’s recent draft guidelines on ME/CFS2—which considered other research including a separate survey of patients with severe ME/CFS, as well as criticism of therapist delivered treatments—a recommendation for GET/CBT has been removed, saying that the evidence is mixed or unclear. Meanwhile, long covid researchers are also learning to live with the increased level of scrutiny and complaints that teams working on CFS/ME have come to expect.​

Ben Marsh (doctor wME) and doctors dealing with long covid are also mentioned but I don't want to quote the whole article. In short, it tries very hard to look like it gives a balanced picture. Take a look and see if it worked.

Full article: https://www.bmj.com/content/373/bmj.n1559

 

related news release
Full title:
Long COVID has resurfaced tensions over treatment of chronic fatigue syndrome
But some see an opportunity to progress understanding of post viral syndromes

Spoiler

Many long covid patients are experiencing extreme fatigue, a situation which has reignited the polarisation in approaches to treatment and rehabilitation of chronic fatigue syndrome (CFS), according to a special report today.

The BMJ reports on examples where doctors have been challenged for speaking out in the media after talking about the role of exercise in rehabilitation.

But it also finds that beyond the controversy, some clinicians see an opportunity for long covid to progress the understanding of post viral syndromes and to acknowledge they are a very real condition.

CFS, also known as ME (myalgic encephalomyelitis), is a complex long-term illness often triggered by an acute infection with a wide range of symptoms that can have a significant effect on daily activities, the most common being extreme fatigue.

In 2011, the PACE trial found that both cognitive behavioural therapy (CBT) and graded exercise therapy (GET) led to greater improvements in some participants than medical care alone. But the results led to controversy as some CFS/ME advocates object to suggestions that their illness has a psychological element.

And tensions have now resurfaced with the advent of the pandemic and long covid.

Around 376,000 people in the UK report symptoms more than a year after covid-19 including extreme fatigue and other symptoms similar to post-viral fatigue syndromes and ME/CFS.

Freelance journalist Melanie Newman spoke to clinicians and academics involved in ME/CFS and long covid research, and found that what advice is given, what research is conducted, and how it is communicated has become a highly sensitive issue.

Some have been challenged for speaking out. For example, Michael Sharpe, a professor of psychological medicine, was castigated for suggesting the disease is "all in the mind" or created by the media, while an activist asked for Trish Greenhalgh, professor of primary care at Oxford University, to be removed from a conference because she had previously commented on exercise and PACE in a public webinar.

Professor Paul Garner at the Liverpool School of Tropical Medicine, who had recovered from long covid, says some advocates actively oppose research on exercise. "They believe the disease lasts for life," he says. "They reject any research that examines psychological approaches to treatment or that evaluates the role of progressive physical activity in recovery in ME/CFS, and I would assume by extension to long covid."

Charles Shepherd, medical advisor at the ME Association told the BMJ: "We are not against exercise. Our view is that graded exercise can be harmful."

Ben Marsh, an NHS consultant paediatrician who contracted viral pericarditis in 2017, thinks physical therapy should be treated like medication or surgery, with patients told about possible side effects and what to look out for.

Newman spoke to other doctors and healthcare professionals helping long covid patients and found them to be very aware of these concerns and quietly working out how best to treat each patient without causing them harm.

Results are - predictably, given the early stage of the research - mixed, she writes, but CFS/ME specialist Rachael Rogers at the Oxford long Covid clinic, says the key is careful screening, assessment and individualised treatments.

Respiratory consultant Paul Whitaker, who set up the first long covid clinic in Yorkshire, says: "For my longstanding patients with long covid who fulfil the criteria for CFS they do seem to get worse with strenuous aerobic exercise. However, long covid is a very diverse group and there are many others who do need an exercise based regimen." Defining which groups will benefit from exercise remains a challenge, he adds.

In a linked commentary, Carolyn Chew-Graham, GP and professor of general practice research and colleagues argue that patients with long covid are still struggling to get their voices heard above doctors. They believe that this is a form of "structural iatrogenesis," where patients are harmed by power imbalances in the bureaucratic and cultural systems within medicine.

People with long covid describe feeling "gaslighted" because the opinions of a few have tended to dominate the evolution of treatment, investigation, and a growing knowledge base, they write.

###

Externally peer reviewed? Yes (feature), No (patient commentary)
Evidence type: Feature; Opinion
Subjects: Chronic fatigue syndrome and long covid patients

Link to article: https://www.eurekalert.org/pub_releases/2021-06/b-lch062221.php

 

If I remember rightly Melanie Newman is a journalist with no real understanding of the science who has a strongly held belief in the mind influencing the body. I think she has some experiences of her own that she believes prove this. She sees herself as a patient advocate but is out of her depth. Presumably her approach suits the BMJs agenda.

 

"Published in 2011 in the Lancet, the Pace trial found that both CBT and GET led to greater improvements in some participants than medical care alone."

I wonder how often journalists use similarly vague wording when they report on a large and influential study:

...found that the investigated intervention "led to greater improvements in some participants than medical care alone."

Could it be worded more vaguely? And would anyone see that as successful results?

 

I am not aware of any proper science based evidence proving there are efficacious models of rehabilitation for pwME.

 

White is getting a lot of publicity lately.

 

BMJ article:

"The insurance company Swiss Re—with which Sharpe makes clear that he has no financial link—asked him to do a presentation on early observations at the clinic. The slides from his talk showed that long covid encompasses a range of conditions, with symptoms influenced by biological, psychological, and social factors, including media coverage, and that it has some similarities with CFS/ME."

Maybe payment for talks doesn't count as "financial link". But what about another author of the PACE trial:

"Peter White is Emeritus Professor of Psychological Medicine at Barts and the London School of Medicine, Queen Mary University of London. He has been a CMO for Swiss Re for many years, and sits on the Independent Medical Experts Group, which advises the Ministry of Defence regarding its Armed Forces Compensation Scheme."

https://www.swissre.com/profile/Peter_White/ep_8a6011

And from a declaration of COI on an expert opinion for SMC:

Prof Peter White: “PDW has led or co-led several trials of behavioural interventions for patients with chronic fatigue syndrome, including the trial he has quoted. He is a member of the Independent Medical Experts Group, which advises the UK Ministry of Defence about its Armed Forces Compensation Scheme, and provides consultancy for the re-insurance company Swiss Re.”

https://www.sciencemediacentre.org/...deline-on-diagnosis-and-management-of-me-cfs/

And even if another person who was, contrary to his public account, also involved with the PACE trial, didn't have any 'financial links' to Swiss re, you'll find him on their website, too.

https://www.swissre.com/profile/Simon_Wessely/ep_2d4f95

And then there's Michael Sharpe's own work for another insurance company:

Screenshots:





So much more spin in that article that it reminds me of that SMC (Science media centre London) briefed journalist that worked for Reuters. Forgot her name.

(Edit: replaced the plural form with the singular form of 'insurance company' -- edit2: After checking the declared COI in the Lancet paper, it's actually the plural, but not clearly worded as to which part of his work was paid or voluntary: "MS has done voluntary and paid consultancy work for government and for legal and insurance companies", https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065633/)

 

It feels like gaslighting to me.

 

Quote from @Wyva's post - 1st post in thread

Well, no...no one emphasises PEM as a disease, except maybe PG. It is an exacerbation of existing symptoms possibly along with a flare up of normally dormant ones. I can't recall anyone referring to it as disease in and of itself. It is a characteristic of a disease.

Given his day job PG should have known that the majority of people would recover in time, probably within a year, even if they were scared they would be one of the unlucky ones that didn't. Most responsible ME patients with half a clue would have told him that within the first year the chances of recovery are still very high. So, where he got that from....?

Most of us long term did not take to our bed with every new or altered sensation. We busily ignored them because we believed what we were told - there's nothing seriously wrong, it will pass.

Everyone is entitled to express their own stories in their own words but this guy is just determined to have us all judged by his experience.

 

By his interpretation of his experience.

 

Unfortunate article but at least the responses from COVID-rehabilitation doctors (Gordon McGregor, Sally Singh, Rachael Rogers, Paul Whitaker, and Rob Barker-Davies) don't sound so bad. Some seem aware of the problems with graded exercise and ME/CFS.

 

"In a 2019 survey of more than 2000 ME/CFS patients commissioned by the charity Forward ME,16 most patients reported worse symptoms after GET. In the National Institute for Health and Care Excellence’s recent draft guidelines on ME/CFS2—which considered other research including a separate survey of patients with severe ME/CFS, as well as criticism of therapist delivered treatments—a recommendation for GET/CBT has been removed, saying that the evidence is mixed or unclear. Meanwhile, long covid researchers are also learning to live with the increased level of scrutiny and complaints that teams working on CFS/ME have come to expect."

it totally misses the context of all this; namely the new NICE guidelines, several years in the making, and a thorough review of the evidence.
As far as I remember the guidelines draft says the evidence for GET/CBT is 'low or very low' not 'mixed or unclear'.
But it isn't published yet and the 'fight back' by the 'researchers' involved in CBT/GET trials has been all too evident since the release of the draft guidelines.

Long covid sufferers have just become their 'human shield'.

 

Did people see this? https://blogs.bmj.com/bmj/2021/06/2...ications-around-long-covid-can-harm-patients/

 

and another one off the back of this:
Long covid has reignited polarisation in approaches to treat chronic fatigue syndrome
https://www.news-medical.net/news/2...oaches-to-treat-chronic-fatigue-syndrome.aspx

eta: and another
https://floridanewstimes.com/long-c...treatment-of-chronic-fatigue-syndrome/292295/

eta: and another
https://thehealthguild.com/long-ter...-treatment-of-chronic-fatigue-syndrome/15723/

 

Thank you for sharing this link @Caroline Struthers

 

Yes, she was. She was behind METRIC http://www.virology.ws/2019/01/28/trial-by-error-my-letter-to-professor-chew-graham-about-metric/ and one of the FINE investigators. And then she had a change of heart...https://www.virology.ws/2020/10/21/trial-by-error-professor-chew-grahams-apparent-shift-in-position/. @dave30th did you ever hear from her?