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

Trish said:
In terms of Twitter, I agree, it's just one man's anecdote and best ignored. Let him enjoy his recovery. But in terms of the BMJ article, I think well reasoned response is justified.
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Yes, certainly give a well-reasoned response @Trish. I was talking more in the long term view.
The BMJ is a lost cause but it is still a platform for comment that might get read.
 
It fits the manuscript to the recovery stories at Recovery Norge. Similar wording, argumentation, with kicks towards ME patients fighting for biomedical research and by saying stories from recovered are more important to listen to.

The planned study on LP in Norway has received a lot of criticism, what a great story for them and such great timing.. His story has already been shared at Recovery Norge's facebook page and on twitter by research director at the Norwegian Institute of Public Health.
 
Esther12 said:
Are some people just assuming this is LP based? Couldn't it be someone following Wyller's ideas. To me, jumping to assumption on anything to do with this seems like a bad idea.
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Same difference. The packaging doesn't change much about the content. But the phrasing is definitely familiarly odd and unnatural, a mantra to repeat more than a real sentiment.
 
Jonathan Edwards said:
Apart from anything this guy is supposed to be a healthcare professional, actin in the interests of others. Where in all of this self-advertising is the consideration of how it all looks to those who looked down the barrel of the gun and it went off? They are just the debris who can go and suffer it seems, now that he is recovered.
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Or his initial months of failure doing the exact same thing without ever having considered any of the ME stuff.

Like you said, let's all ignore it, this is far larger than the odd episode.
 
Leila said:
This sounds like he's almost blaming the ME organisations for "wrong" advice? Why not mentioning the data talking about all those who didnt recover with LP, GET etc.?

Maybe recovery and the perceived regain of control is so traumatic that people need to rewrite their story to make sense out of something that just doesnt make any.

It would have been fine if he was just talking about his own experience but there's a strange connotation in his words :(
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It is not even subtle, it is straight up gaslighting
 
I imagine Charles Shepherd and others are feeling as though they have helped someone across the road, only to have the person turn around and throw them under the oncoming bus.

I don't think we even need to resort to 'he didn't have what I have' (as in PVFS and ME/CFS).

I meet Paul Garner's anecdote with mine. I and my two children became sick after a virus, one was able to recover over two years, with no special treatment. Seven years on, my son and I have not. As lovely as my daughter is, it is not possible to attribute her recovery (versus the failure of my son and I to) to some superior determination or outlook on life or particular approach to rest and exercise. It just happened, with time.

If you look at the charts for the Dubbo studies, most people recover over time. The odds were always in Paul Garner's favour - he just needed to wait it out.
 
Jonathan Edwards said:
Apart from anything this guy is supposed to be a healthcare professional, actin in the interests of others. Where in all of this self-advertising is the consideration of how it all looks to those who looked down the barrel of the gun and it went off? They are just the debris who can go and suffer it seems, now that he is recovered.
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Brilliantly put. Im too upset to produce such good quotes
 
rvallee said:
Or his initial months of failure doing the exact same thing without ever having considered any of the ME stuff.

Like you said, let's all ignore it, this is far larger than the odd episode.
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I dont think we can ignore it sadly because desperate carers and patients will try this now because of him. Got to try and save a few souls from potential permanent worsenings
 
Jonathan Edwards said:
From what I read it looks pretty certain to be related to recovery Norge, it even uses the same phrase - listen to those who have recovered.
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Yes, but I think that any inaccurate or exaggerated criticism is likely to be unhelpful here.

It's easy to imagine someone looking to discredit advocates by selecting heated responses to this tale for a follow-up piece, and I'm sure that some patients will be happy to oblige.
 
Esther12 said:
Yes, but I think that any inaccurate or exaggerated criticism is likely to be unhelpful here.

It's easy to imagine someone looking to discredit advocates looking for heated responses to this tale for a follow-up piece, and I'm sure that some patients will be happy to oblige.
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Im happy to oblige, cause this gaslighting is not an acceptable (im not talking about personal insults).
 
Esther12 said:
We've already seen how heated comments from patients on social media have helped the PACE trial researchers get away with unacceptable behaviour. To me, that seems something to try to avoid repeating.
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How has it helped them exactly? Im not gonna pretend im not angry just so they wont fabricate a false death threat claim. I do a shit load of advocacy, i reserve my right to have a heated tone without personal insults.
 
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