BMJ letter from LongCovid doctors.

So... doctors who seemingly will are also patients might have a taste of what ‘post-viral medicine’ has to offer: mindfulness, meditation, CBT and ‘It might take a few months to recover’.

They may be offered a spot in the specialist ME clinics if in the uk, where they might get briefed on how to cope and how to self-manage. Or in a clinic nearby, they would learn about central sensitization, about good posture and how to do acupressure.

it is essential that physicians who are in socialized health care systems be receiving the same care as the other commoners, and observe how they feel in that process. It may means months on a wait list.

(In my early years as an obstetrical nurse, there was this doctor who tore her meniscus on a ski accident. There was a 2 year wait to see the orthopedist, but she went to the doctor and he booked her surgery for the end of the week)

Welcome to our disease. We as patients living with ME have tried really hard In the last 30 years to get attention for this disease. And here we are.

 

" objective evidence" was the bit that floored me

 

One wonders whether Wessely and David would now be prepared to admit to any other infelicitous statements and accept responsibility for the consequences of them.

 

Peope are advised not to try to "run off" or "jog through" long covid. Does Simon recall the article by Caroline Richmond in GP Magazine in late 1988 or early 1989? The piece appears to have been written before publication of the 1989 paper, as there had to be a subsequent correction of the citation details. The editor imposed an image of someone jogging and inserted the helpful subheadings "Tell patients it's time to pick up the pieces" and "Gradually expose them to hard activity".

Does Simon accept that GP's were introduced to misleading advice probably even before the publication of his paper on the subject, how does he think this could have happened, and what steps did he take to correct any "misunderstandings"?

 

I hope they don't get channelled into this type of "one-stop-shop"...


https://mus.elft.nhs.uk


https://mus.elft.nhs.uk/uploads/files/10/MUS SHINE leaflet.pdf

 

My ‘first brush’ with ME/CFS/PVFS was as a post viral fatigue patient in 2001 and I was, indeed, given a PVFS diagnosis by a Consultant (!)

I was very surprised in 2019, on finding a few of my notes made in 2001/2, that the PVFS gave me:

PEM (delayed 12-24-36 hours)
aching muscles, especially neck and shoulder blades (just like I get now)
shortness of breath
racing heart
.....amongst others.

I ‘recovered’ from PVFS - to about 90-95% health - by 2005.

 

......or, as I read recently in a private FB group for PwME, the clinics now advise “pacing up”......
GET by another name!

 

https://twitter.com/user/status/1306519366259945473

 

There is potential for a wealth of hidden meaning in that question mark.

 

https://twitter.com/user/status/1306523508382601216

 

https://twitter.com/user/status/1306525021460979713

 

Right. Could have fooled all of us with his knighthood and his ‘successful practice’ of fooling unsuspecting and vulnerable patients

 

"Pushing through" is the essence of graded exercise. Talk about rewriting the past! And Keith Geraghty was criticised a few years ago not thirty.

Everything they write is designed to give one impression while that impression is completely deniable if they are taken up on it.

 

(Apologies for just popping in.)

https://twitter.com/user/status/1306568394582491136

Code:

https://twitter.com/WesselyS/status/1306568394582491136

"The difference with pacing is that the goal is not living within limits but sooner or later to extend them. But gradual and if possible are key words. And it doesn’t have to be exercise at all. It’s activity".

And what if it is not possible?

My understanding of SW's and the PACE trialists' approach is that pwME only think it's not possible, and these allegedly "unhelpful believes" will regress with graded exercise (or maybe other activities).

As for my part, I wanted to regain my health, to again have an approximate amount of active hours I had used to have before I got ill, hours that I could fill with a range of activities other than needing to rest. Only after I have experienced over many years that none of the strategies I tried did work my goal shifted to coping with the limits set by the illness.

I don't know for certain whether the relapses and later progressive deterioriation of my illness were due to the exertion of trying to gradually increase my levels of exercise and other activities. However, I would have appreciated if doctors had believed me earlier. And even now it is not my "goal" to "live within limits" but to cope which I think also means accepting those limits.

As for SW's trial to defend his old assumptions -- I can see no reason why a common sense form of graded exercise should not work if there existed the proposed individual "baseline" that allowed everybody ill with ME to maintain and extend exercise.

Why can't SW admit that his concept of ME is based on the idea that pwME mistake normal physiological reactions for an illness?

(Or, even if he thinks his conecept doesn't apply to 'long covid', he should be able to specify how to define the 'possibility' of maintaining and extending exercise.)

Edited for clarity.

 

1. Regular exercise, with which the patient can feel comfortable.
2. A graded increase in exercise, involving walking, swimming and so on.
3. Encouragement of exercises such as yoga and callisthenics.
4. Gradual exposure to all avoided activity.
5. Cognitive work to break the association between increase in symptoms and stopping or avoiding the activity.
6. Further cognitive strategies involving alternative explanations for symptoms. For example, if the patient admitted to thinking 'I feel tired, I must have done too much', one might ask the patient to look for alternative explanations, such as 'I may be tired because I haven't being doing much lately'
7. No further visits to specialists or hospitals unless agreed with therapist. 8. Involvement of a co-therapist

From the 1989 paper. It needs no comment from me.

 

The bitter truth is that you can fool some of the people all of the time and all of the people some of the time but not all of the people all of the time. Especially if you keep contradicting yourself.

 

Simon finds himself in an interesting tactical position. I think it is called being "forked", "well and truly forked". Any concession to Long covid leaves him hopelessly exposed to ME.

 

Why does it make any difference when it was written? Did doctors who were sufferers not have a lot to contribute back then? Did they not have a unique perspective back then? "We wrote this 32 year ago" seems a defence that is indefensible; it was just as stupid to say it then as it would be now. SW's comment therefore seems a tacit acknowledgement they were wrong to say it 32 years ago.

 

As in smoking someone out.