News about Long Covid including its relationship to ME/CFS 2020 to 2021

I can't say I agree with the logic here:

https://twitter.com/user/status/1350121183988092929


I understand where it comes from, but this is very misguided. Literally everything useful, from the very terms to advice about rest and pacing, comes from us and PEM is an ME-specific term. It's only because of the stubborn denial that this has to be done. It's the worst reason to do anything.

But agreed that it is deliberate. Which... wow. Not surprised but still shocking how self-defeating medicine can be.

 

https://twitter.com/user/status/1350132889866919937

 

It seems that I'm in the minority here, but I totally understand it.

I don't think that there is that much useful knowledge around ME/CFS, and there's a lot of prejudice and stigma. Advice about rest, etc is often uncertain and some advice will be counterproductive for newly ill PVFS patients who will end up responding in a range of different ways.

I think that Long Covid patients would benefit from understanding more of the history around ME/CFS, and I worry that there are some signs of the same mistake being repeated. But things are still pretty bad around ME/CFS and it's not as if we have any fool-proof plan for avoiding those mistakes.

 

There’s a difference between keeping ME and LC separate as a strategic choice, like Amy said, and keeping them separate because you believe untrue things about ME. From what I can tell, the latter is occurring contrary to what she states.

 

P

I was the person who highlighted the table on the right in connection with long Covid. I think I also highlighted the other table. Has anyone other tables like them that could be shared. What I am looking for are tables with lots of symptoms on them that give frequency percentages, not just lists of symptoms without percentages.

 

I can understand the desire to avoid the stigma but I believe this leads along a path to a post-Covid syndrome which is identical to ME. I have issues with this 'tactic' about how it's making decisions about ME patients without involving them and I also believe it's ethically questionable.

And when is the big reveal meant to happen? One, two, five, ten years down the line, the covers are whipped off of 'Chronic LongCovid', "taadaa, it's actually ME folks, now go be nice to pwME with your new found compassion"???

 

The other problem with the tweet from Amy Small is that it suggests a unity of approach, for which there is no evidence. We do not know the deliberate intent of other groups, although the good intentions of the others may be open to question. The most likely explanation is that there are diverse groups with different interests and intentions, some of them not benign.

 

The Sun - Our kids were left unable to eat or walk by Long Covid and treatment was 'torture' - but docs don't know how to help


“He was made to do physiotherapy which was like watching him being tortured – he was screaming in pain.

“I even had the school attendance officer on the doorstep telling me Mani needed to get back to lessons – yet he was so poorly he couldn’t even lift his head.

“For a while we trusted the professionals and bought into what they were saying, we even arranged for some cognitive behavioural therapy (CBT) to treat Mani’s supposed ‘anxiety’.

“It was only when I began doing some online research and found the Long Covid Kids support group that I realised there were other parents going through the same experience.

“It was such a relief to finally be believed.”

Doctor's plea for compassion
Paediatrician Dr Nigel Speight is an expert in child Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).

He sees parallels between Long Covid and ME/CFS – also a post-viral condition which is possibly triggered by the body’s immune response.

Dr Speight said: “For many years, children and adults with ME have been subjected to disbelief by the medical profession. The same thing might be beginning to happen with Long Covid children.

“The medical profession would be sensible to accept Long Covid as a post-viral, ME-like illness, and treat it open mindedly, believe in it, and be supportive.

“Doctors don’t have too much to offer these children in terms of a cure, so the least they can do is support and protect them.”

 

Here's another early one, from Komaroff's contribution to the CIBA Conference in 1993:

 

https://twitter.com/user/status/1350190010008526851

 

it *is* deliberate. If we make too many comparisons then people will say to LC pts "you have ME" and then box them up and ship them off and forget about them. The longer we keep them separate, the more curiosity there is, the more research will be done and the more we can learn

This looks very naive to me. More research is no use if it is based on pretence.

I agree. How much space is there really between this approach and Greenhalgh?

It all looks very unhelpful to me.

 

Horrible. Predictable. Still horrible.

https://twitter.com/user/status/1350037177498005505

 

LongCovidPhysio

We strongly recommended that all Physiotherapists providing care for people living with #LongCovid use risk stratification before implementing any exercise as rehab. Exclude post-exertion malaise. Exclude potential cardiac symptoms. Listen to the patients story.

The mind set just does not change.
There is NEVER any reason to use physio for 'rehab' following a a viral illness.
OK if the person likes exercising and wants to know how slowly to restart, but nothing to do with 'rehab'.

 

A further point about that tweet from Amy Small. Its confirmation of something that we all know from experience, that ME patients are discriminated against, and that members of the medical establishment are aware of that discrimination and are taking steps to distance their brand of post-infection chronic illness away from the wrong sort to avoid that discrimination.

 

The king is dead, long live the king.
It was niaive to think it would be otherwise.

 

Thank you @Sarah for posting this. Unfortunately I missed seeing it and am only beginning to catch up a bit this evening.

Maybe notice of it was posted earlier but if so, I missed it totally. Would be glad of early notification where possible because of overlaps with ME so I can brief my MP and get him involved. I don't know if Carol Monaghan is circulating info around the APPG ME group.

The charities are posting about it today and it was very briefly mentioned at the Cambridge GP meeting yesterday evening. I think Charles Shepherd may have been there but am not totally sure.

 

I think @Andy posted about it on this thread a while back.

 

Thanks. I missed it totally.

 

Very much.