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

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.

 

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.

 

Yes, from the facts in the blog it is 99 perc sure he has been in touch with Live Landmark. Recovery Norway already had a FB-post ready for the story

 

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.

 

And I have a feeling who this Norwegian PhD candidate might be..

 

It is not even subtle, it is straight up gaslighting

 

Brilliantly put. Im too upset to produce such good quotes

 

Garner would very likely have been put in touch with Recovery Norge by Flottorp or one of the others at the Norwegian Health Institute (where Larun is?).

 

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

 

I suspect he will not be flavour of the moth with a lot of others with Long Covid.
It could all get quite prickly.

 

I think it might divide the long covid community, as it seems a bit split in two with a hopeful part and the other one more realistic in terms of the prognosis.

 

If I remember correct Henrik Vogt tweetet recovery stories to Garner. And yes, Larun is at the Norwegian Institute at Public Health.

 

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.

 

Live Landmark is a doctoral candidate and the trial is part of her dissertation research, as I understand it.

 

Im happy to oblige, cause this gaslighting is not an acceptable (im not talking about personal insults).

 

Correct

 

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.

 

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.