George Monbiot on Long Covid, Chronic Fatigue & Misogyny

Countrygirl

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https://threadreaderapp.com/thread/...4F0DPEqgCsomlXlRHdO90HK6W0gXNUJO4GFRuveXmP_Ro


How I became a human plague – and stumbled into one of the most astonishing scientific stories I’ve ever encountered.
My column.
Plus thread.

Apparently just by talking about it, I’m super-spreading long Covid | George MonbiotA professor has suggested that press coverage could make people believe they have the condition, says Guardian columnist George Monbiothttps://www.theguardian.com/commentisfree/2021/apr/14/super-spreading-long-covid-professor-press-coverage

1. There’s an aspect of this story that I didn’t have space for in the column. This is about how the scientific and media establishment closed ranks around bad science, defending it from legitimate questioning and criticism.

2. In 2011, the Lancet’s editor, @richardhorton1, a man I otherwise admire, was challenged about major anomalies and irregularities in the PACE Trial paper he published. He dismissed the critics as “a small but highly vocal minority”. They turned out to be right.

3. In 2012, a promoter of the now-debunked claims that Cognitive Behavioural Therapy and Graded Exercise Therapy are effective treatments for ME/CFS was awarded the John Maddox Prize for defending them against what the Prize board called “intimidation and harassment”.

4. Intimidation and harassment are never acceptable. It’s true that some patients resorted to online insults and abuse, which was clearly wrong. But much of what was called “intimidation and harassment” was in fact legitimate critique of the methodology and requests for data.

5. Queen Mary University of London spent 5 years rebuffing requests for the PACE Trial data, characterising them as “vexatious”. In the media, these requests were described as “harassment”. Again.

6. But these data should have been in the public domain from the outset. When they were eventually released and re-analysed, they showed that the PACE Trial conclusions were unsafe and unsupported.

7. When patients and the scientists supporting them revealed massive methodological flaws and showed that the £5m PACE Trial had reached unsafe conclusions, it was an amazing victory for citizen science. But it was reported in the media as - you guessed it - further “harassment”.

8. Here’s something that shouldn’t need stating. Scientists should NEVER close ranks against empirical challenge and criticism. They shouldn’t deny requests for data, shouldn’t shore up disproven claims, shouldn’t circle the wagons against legitimate public challenge.

9. Some major soul-searching is in order. Why was it that massive methodological flaws in the PACE Trial weren’t picked up in peer review? Why weren’t they spotted by the steering committee and external adjudicators?

10. Why weren’t the trial data released from the outset? Why was it left to patients and independent researchers to expose the problems with a massive and expensive trial? Why did senior figures and boards continue to defend disproven claims?

11. A great injustice has been done to patients already suffering grievously from a terrible condition. On the basis of flawed findings, they’ve been told that their condition is largely psychological, and they’ve been pressed into useless and, arguably, dangerous treatments........................
 

lenora

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George Monbiot, journalist of The Guardian, on Long Covid, Chronic Fatigue and Misogyny

(It is mostly about ME)

We have a new champion!

Yes, the journalist from The Guardian does have some good points. Let's hope they're listened to.

@Country Girl: Two questions. The first is do you know how much the British Govt. is putting into research for Long COVID?

and Second: Whatever happened to the young woman who was almost dying in a hospital in the north of England, I believe. I never saw a later report on what occurred. I may have just missed it. Sorry. Yours, Lenora.
 

Countrygirl

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Yes, the journalist from The Guardian does have some good points. Let's hope they're listened to.

@Country Girl: Two questions. The first is do you know how much the British Govt. is putting into research for Long COVID?

and Second: Whatever happened to the young woman who was almost dying in a hospital in the north of England, I believe. I never saw a later report on what occurred. I may have just missed it. Sorry. Yours, Lenora.
Hello @lenora


Yes, a huge amount. I think they added another 24 million yesterday.

I have been 'laid aside' for some time with three strokes, one in my eye, which brought glaucoma to light, and my poor sight and the pain has meant I had to take a break from PR, but I keep in regular daily contact with 'Eva'. I then developed Covid, which culminated in another small stroke, and PVS which I still have on top of the ME. I am now putting my efforts into preparing for the ME clinics which we are starting again, which will also be attended by people with Long Covid.

'Eva' told me she was going to make a post, but it sounds as if she hasn't.

I haven't returned to that thread yet, as I am limited how much time I can spend here as things stand at the moment.

Finally, after a serious complaint by Eva's husband it was agreed that the consultant be withdrawn from the case and Eva was moved to another ward. It raised our hopes as the consultant sounded more reasonable, but he doesn't accept ME it seems, and said it is 'just a lazy doctor's diagnosis'. He has diagnosed her with migraine (which she doesn't have) and de-conditioning. He gave her 31 injections of Botox into her scalp and added an antipsychotic which is supposed to help with pain, It didn't help. She has just been given a nerve block, but that too has increased some of her pain and she greatly regrets having it done. They are encouraging her to try to walk, but she is just able to shuffle a little and the pain then intensifies. Basically, after all this, she is in much the same state. In fact we are just in the middle of a conversation as she says she became worse overnight.

Update: she says she has just been taken for an MRI, but they didn't understand she cannot sit up so long because of the severe pain. The results will be ready this afternoon.

Her scans from last year have been declared to be 'normal'.

At least on this ward the staff are not so unkind as they were on the other one.

Basically, we are still at square one. I suspect they will discharge her soon as she doesn't improve. The question will be: where can she go as Eva's needs are high and she needs a team to care for her.
 

splusholia

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Yes, the journalist from The Guardian does have some good points. Let's hope they're listened to.

@Country Girl: Two questions. The first is do you know how much the British Govt. is putting into research for Long COVID?

and Second: Whatever happened to the young woman who was almost dying in a hospital in the north of England, I believe. I never saw a later report on what occurred. I may have just missed it. Sorry. Yours, Lenora.
I’ve been discharged from my M.E. clinic in the U.K. and told it’s because they have too many long covid cases. It makes me kind of suspicious of the U.K. government. Are they really making new clinics, or just kicking ME people out of old ones and repurposing them? Hmm!
 

Countrygirl

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I’ve been discharged from my M.E. clinic in the U.K. and told it’s because they have too many long covid cases. It makes me kind of suspicious of the U.K. government. Are they really making new clinics, or just kicking ME people out of old ones and repurposing them? Hmm!
That is just not right! You have been ill for longer so should be seen before anyone with LC.

I wonder how common this is.
 

Viala

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I’ve been discharged from my M.E. clinic in the U.K. and told it’s because they have too many long covid cases. It makes me kind of suspicious of the U.K. government. Are they really making new clinics, or just kicking ME people out of old ones and repurposing them? Hmm!
In my country they cancel many treatments including the one for cancer and other life threatening diseases, there are over 100k excessive deaths counting from Autumn last year and these are not covid patients. It looks like they treat covid only and nothing else. It's ridiculous what they do.
 

lenora

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@Countrygirl.....you absolutely must take care of yourself. Losing one's eyesight is nothing to not take seriously.
I don't know if Eva's in better or worse shape, and I guess you don't know either. A implantation was suggested for me, but after doing some extensive research, I decided against it. I'm trying to make a go of things myself...not easy and I'm sorry that Eva isn't having better results. I don't blame people for trying..they do sound like a magical cure, don't they?

Eva's husband sounds as if he's taken over her representation...and that's wonderful. I'm glad the floor is an easier one to deal with. Lack of interested medical personnel and rudeness are the last things needed.

That's quite an uptick in funding from the U.K. govt., isn't it? At last, perhaps all countries can contribute what they can in the way of viable research.

@Hip....I don't know if Prof. Sharpe is right or wrong. I can see both sides of this story, and have been around long enough that I've seen too much research that could have been of some benefit to us not given, and here we still sit at least 35-40 years later. So it's possible that it could go either way. I'm not in any cheering section just yet...but hope that I'm proven wrong. Yours, Lenora.