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

From MEAssociation:

This opinion piece was featured in the British Medical Journal online this morning and is causing mixed views to be expressed. It tries to cover a wide range of opinion including those held by some in the medical profession. Controversial topics include exercise, graded exercise, the PACE Trial, the management of ME/CFS and Long Covid, and the proposed new NICE Guideline on ME/CFS.

It also contains some very familiar criticisms/attacks on the patient community. While Dr Shepherd was interviewed for this article, and we stand by what he has said, we didn't see it before publication and are currently considering a formal response.​

The original Facebook post:

 

This most be SO confusing for outsiders who are not familiar with the history. But I guess that's the whole idea..

No word about pushing through no matter how you feel which is the core of the debate concerning GET.
The way pacing and graded exercise are described are identical, instead of opposites. Smokes and mirrors once again.

Quote (my bold):
Garner took advice to accept the limits imposed by the virus. The ME Association recommends “pacing”8: slowly building up activity levels while monitoring one’s response to exertion and limiting activities accordingly to prevent post-exertional malaise. It says that vigorous exercise should be avoided until recovery has been complete for some time.

He attempted pacing9 but struggled to discover a pattern between his activities and his symptoms that might help him recover. Three months after contracting covid, he says, he was unable to get out of bed for more than a few hours each day. “I kept trying to convince myself I was getting better, but I wasn’t, and I became too insecure to do anything,” he explains.

Weeks turned into months. A CFS/ME advocate wrote an open letter10 to people with long covid telling them to “brace yourself,” as “you might not end up being sick for a couple of months or a year or even five years. Think decades. Maybe even the rest of your life.” Garner says that he became stressed, locked into a pattern of symptom monitoring to prevent relapses and an unconscious fear of “overdoing it.”

He then spoke to a recovered CFS/ME patient, who committed to helping him recover. Core to this was a compelling explanation of what was happening in relation to the brain and body, which, he says, “changed my understanding of the symptoms I was experiencing.” The support included a credible explanation of his symptoms, his hope of recovery, and techniques to reduce his symptoms and stress. He went on a short bike ride and then, under physician supervision, increased the lengths of his ride over several weeks—a process that he says was essentially GET. “It stopped me doing too much,” he says. “It was very gradual.” He progressed to full health within a few weeks.

 

So what links might he have then? It is not only financial links that can constitute COI.

 

https://twitter.com/user/status/1408068072926191639

 

https://twitter.com/user/status/1408068086817689606

 

This article is obviously not important enough to have this kind of derivative work so clearly it's being pushed as part of a campaign. Likely SMC again.

 

Until she admits having been wrong, having done harm and apologizes for it I will take anything Chew-Graham writes as raging hypocrisy from which she will pull a Garner.

You can't go from prominent HIV denier to respectable AIDS researcher anymore than you can flip this narrative upside down. C-G wrote many nasty things about us and chronic illness in general, too many to take anything she says with anything but utmost suspicion as to her motives.

 

Obviously the idea that a shady professor of medicine just volunteers work for a giant insurance company that just happens to repackage those ideas to make money is beyond laughable.

 

According to its protocol, Carolyn Chew-Graham is one of five members of the Trial Steering Committee for Christopher Burton's 'Multiple Symptoms Study 3: pragmatic trial of a community based clinic for patients with persistent (medically unexplained) physical symptoms'.

 

The letter should have read "debasement" - joys of autotext

 

Hopefully a number of e-letters go in.
Over the years, the BMJ has tended to post most e-letters.
Best not to personalise criticism too much.
Ideally, do it in the format of a medical journal article with numbered references at the bottom (websites can be used as references)
Ideally have at least 2 references, but one easy one is to start with referencing the original article itself.

 

No, I never heard back from her. It is an interesting turn-around, although whether it is apparent or actual is hard to assess. It would help if she explained her perspective on her past efforts, like the METRIC program someone alluded to.

 

Exactly! As much as possible continue: work, family life etc.
I was told I would recover in one to three years.
I've said before, I had ME for 6 years by the time I was told cfs only lasts one to three years, and that I would get better soon.

Six years from the start of ME until it was diagnosed.

With gradual onset, I worked full time, and carried on as usual.
Even when getting worse, I took a short break, then went back to work full time.

When symptoms became much worse, almost all I did on my off work hours was rest, in order that I could keep working.
I still did full time work for many months, until the cognitive problems really worsened, and I couldn't think through work tasks I had done for years.

I don't know what new pwME do, but I doubt they all give up, and crawl into bed.

 

My experience of this disease very much duplicates what you have outlined above, @DokaGirl. I never cease being astounded by the way many researchers, clinicians, journalists, etc. present this disease in their writings. It's like we are living on two completely different planets. It shows a profound misunderstanding of this disease and the patients who suffer from it, which I find so disheartening. So many also seem compelled to throw the words 'anxiety and depression' into the mix, whereas studies from the American CDC show that ME/CFS patients score quite well on those domains. How did these wires get so crossed? It's like they have blinders on that limit their ability to fully comprehend the true nature of this disease. They don't listen to and respect patients but only see what they want to see. Pathetic and harmful!

 

Have patients with other diseases ever been so vigorously maligned?

Difficult to quantify, I know. MS comes to mind, but I don't know enough about its history. I understand once brain abnormalities were found that put paid to that notion.

 

I fail to understand why such brain abnormalities were not ascribed to proof of aberrant beliefs, as, according to some, all biomedical findings regarding ME seem to be.

Being found in the brain, where a lot of thoughts and beliefs are probably kept, using the 'logic' of such things, if people with MS are ill, and people without MS aren't, and the brain abnormalities are only in the people with MS - then......clearly the brain abnormalities must be the physical manifestations of aberrant thoughts and beliefs.

Possibly they hadn't refined the technique of doing so?

 

Yes, @Wonko

PwME seem to be ascribed magical powers where we can make all kinds of symptoms happen.

Of course, pwcancer, pwheart attacks, pwulcers, and others were told they somehow thought themselves into their disease.

Early on I was blamed for causing my ME by being a type A person.

 

There are differences between the nature of brain abnormalities found. The sorts of brain abnormalities found in ME, things like reduced white matter, downregulation of HPA axis, differences in brain regions used and the degree they're used seen with fMRI, evidence of activated microglia, are I think either not solid enough findings or just might indicate things like the fact that we deal with fatigue (and other symptoms) which will show up in the brain, or are within the realm of the kinds of abnormalities you see in psychological disorders. (because abnormalities along those lines are seen in psychological disorders)

Whereas with MS you have lesions in the brain which is a lot more solid and not the kind of thing you see in psychological disorders. I think if you put all the biological findings on ME/CFS together you get a pretty compelling argument that it's not a psychological condition, but I don't think there's anything that's actually really solid or conclusive.

 

Funny how he doesn't actually refute that his research study was made up.

As far as I know Sharpe went to Edinburgh to set up a cbt and get clinic. Not to abandon the field at all.