Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

Apologies if this is the wrong thread for this post. Please feel free to move it if appropriate.

It relates to the Paul Garner/Clare Gerada BBC Breakfast interview last week.

This morning I tweeted BBC Breakfast (belatedly, I know, but there are reasons).

With thanks to @Robert 1973 (I think!) for the encouragement:

https://twitter.com/user/status/1356560230017077264

 

Thanks for that, Trish. This is it:

"Dear BBC Breakfast

I am a barrister, scholar and blogger on legal and health-related matters. I have lived with the illness myalgic encephalomyelitis (ME) in varying degrees of severity since 1981.

Your interview on recovery from long Covid and "ME/CFS" last week with Dr Gerada and Professor was interesting. However, it also contained some dangerously misleading information.

Both contributors' personal accounts of recovery reflected their own experience and were quite acceptable. However, as Ms Munchetty pointed out during the interview, they are both considered experts in their respective fields ie. general medical practice and epidemiology. At this point, their comments matter as they may be interpreted as medical advice by viewers.

Professor Garner raised the subject of "ME/CFS" and claims that he used exercise and positive thinking to recover from ME/CFS and/or long Covid (unclear which). These treatments have been widely shown to be harmful to ME patients. The new draft NICE guideline (final publication due in April 2021) specifically removes these options as recommended treatments from the previous guideline (from 2007).

Dr Gerada claimed "Well, there is nothing that isn't made better through exercise, Okay? Nothing. No matter what age, what condition - exercise will always improve it but in moderation." While that may often be the case with other conditions, exercise is definitely contraindicated for ME patients and also for many people experiencing long-lasting symptoms in post-viral syndromes (such as long Covid).

I have published a critical analysis of Professor Garner's series of posts for The BMJ Opinion series on my blog (link below). It contains information which is relevant to your interview. Unfortunately, these factual inaccuracies continue to appear regularly across many media platforms. The issue needs to be highlighted to avoid further harm to patients who are experiencing long-lasting symptoms.

I apologise for the delay in contacting you. I have had some communications with Professor Garner over the last few months and I was following up with him on the BMJ blogs before publishing my own post. I am also very limited in the amount of work I can achieve because of having ME myself.

The link to my blog post is at https://valerieeliotsmith.com/2021/...arming-flip-flop-on-recovery-from-long-covid/

Professor Garner, The BMJ and me: an alarming flip-flop on recovery from long Covid | valerieeliotsmith
As the year 2020 began, so did the story of a global pandemic which is now known generally as Covid-19. One year on, the world is still coming to terms with both the short and long term effects of the disease. The latest recorded worldwide death rates have exceeded two million and the disease is…
valerieeliotsmith.com

I look forward to hearing from you. Thank you and best wishes.

Valerie Eliot Smith

Valerie Eliot Smith

Barrister and Visiting Scholar

Centre for Commercial Law Studies, Queen Mary University of London"

 

https://twitter.com/user/status/1356349412235214855

https://twitter.com/user/status/1356351615981268994


https://twitter.com/user/status/1356354673041661953


https://twitter.com/user/status/1356355996029956101

 

FFS! Hopefully someone will tweet her a link to the draft NICE guidelines...

 

https://www.healthrising.org/blog/2021/02/01/garner-recovery-long-covid-recovery-story/

 

I think someone should tweet her the Chalder COVID paper.

 

I'd be interested to get anyone's thoughts on whether this sounds appropriate for what is supposed to be a multidisciplinary assessment and rehabilitation service. This type of therapy is mainly used for substance abuse. The CF Service told me pts w/ fatigue are referred to them

Sadly I think this is what 'multidisciplinary assessment and rehabilitation service' means. The question is whether it is appropriate to have such a multidisciplinary service. In the absence of any evidence otherwise I suspect not.

 

Yes, I remember why I am now on this forum.

 

So where is the research to show that people with ME, CFS or longcovid are lacking in motivation to get well again?

If people who have not recovered from covid did not want to get their old life back they would not be going to the clinic.

 

Motivational Interviewing along with CBT and LP, the "good / benign" kind of brainwashing.

How are appropriate motivations / thoughts determined?

 

Specualation-

I vaguely recall something from a BBC Radio 4 program - possibly "All in the Mind". They featured an academic who possibly had won the lottery; she had listened to/analysed a serious of tapes of people going on a first date (stressful situation) and generated some "rules" which predicted success/failure [who got along and who didn't]; basically keep your tone level when discussing difficult subjects --- there was probably more if I could remember. Anyway this was being morphed into training - police interviewing suspects (perhaps this was the source of the funding for the original "research"), solicitors (clients getting divorced), --- selling crap was another potential market ----

So perhaps the "motivational interviewing" is really just a re-branding of that "research". I kind of accept that these people don't really care if something doesn't have long term benefits --- as a former colleague said: "let's look at the big picture here --- how will this affect me[£?]". There should be someone to vet this --- is this the best that some medical professionals can do?

 

Apologies for not being clear in my post. When I asked how are these determined I should have said: How do we determine who has the right to decide / be the authority on how we should be thinking and when we should be motivated to certain actions.

 

I realise this is rhetorical musing but for the sake of discussion, only one person has the right to decide how to think and that's you, me, the individual doing the thinking.

As I came to appreciate, when volunteering at a MIND drop in center in Cowley for a couple of years '88-'89 while completely baffled and broken by undiagnosed ME and unable to persue a career, or even remember a telephone number long enough to dial it etc, the art of good counselling (which I received between tea making duties) is absolutely not telling people how to think, it is facilitating their discussion about their own thinking to help them reflect and resolve complex feelings and ideas and make their own mind up.

Facilitation, noone else can know your mind as you do but communication can help. The question is not whether the counselled meets the approval of the counsellor, but whether they meet their own approval.

 

Not only is it not OK for this group of self-appointed experts to define how we should think and feel but I think they are becoming in danger of violating some basic human rights that stand outside and above their wellness considerations.

ETA: I had trouble forming that so apologies if this is not written well.

 

https://twitter.com/user/status/1356147237148098561


PG mentioned. Suddenly only his experience matters.

 

Setting a counter narrative.
History repeating itself.