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

Mij said:
"I fulfilled the Canadian Consensus Criteria for CFS/ME. I was referred by my doctor to a CFS/ME specialist. The ME community sent me unsolicited emails about mast cell deactivation, biological causes of my illness, and told me to rest. Indeed, one person told me that this illness was actually “short haul”-and to prepare myself for an illness that might last the rest of my life."

"I have learnt so much. I became well by listening to someone who had recovered from ME/CFS. I knew the virus had gone.":emoji_thinking:

PG
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It is a bit disingenuous to say the ‘ME community sent me unsolicited emails’. I understand he very publicly conducted his Covid and post Covid saga on line and invited information/support from ‘the ME community’.

At the time, I felt people were getting over excited by the idea of a medical professor who wanted to know more about the overlap between ME and Long Covid and who seemed to understand the concept of PEM. However he was definitely engaging with the ME/CFS community until his road to Damascus experience via the Norwegian phone call, when he seem to go from welcoming the attention from the ME/CFS community to denigrating those who fail to recover and actively engaging with the BPS coterie who assert anyone can recover if they just want to enough and believe enough in the power of exercise.
 
Peter T said:
It is a bit disingenuous to say the ‘ME community sent me unsolicited emails’. I understand he very publicly conducted his Covid and post Covid saga on line and invited information/support from ‘the ME community’.

At the time, I felt people were getting over excited by the idea of a medical professor who wanted to know more about the overlap between ME and Long Covid and who seemed to understand the concept of PEM. However he was definitely engaging with the ME/CFS community until his road to Damascus experience via the Norwegian phone call, when he seem to go from welcoming the attention from the ME/CFS community to denigrating those who fail to recover and actively engaging with the BPS coterie who assert anyone can recover if they just want to enough and believe enough in the power of exercise.
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People send public figures unsolicited emails. And tweets. It’s the way of the world.
I myself receive a number of unsolicited emails from Nigerian princes, various special offer jackpots and sometimes Local Women who want to chat (apparently).
He was posting a lot about how the ME community had been ignored and talking with Charles Shepherd.
 
Interesting to see the definition of disingenuous: not candid or sincere, typically by pretending that one knows less about something than one really does.

I know what @Peter T meant but maybe it wasn't this? Sometimes people really believe what they woof, despite knowing even less than they imply?
 
I think you could say
Underhand
Insincere
Obtuse

I feel it’s disingenuous because he was speaking for, and to the ME community, so to present it as receiving “unsolicited” advice/emails is disingenuous.

Receiving unsolicited emails would suggest that they were unexpected, unwanted, unanticipated. And I think it’s worded that way because he has, in hindsight, chosen to frame it as a problem/unwanted/unexpected/unanticipated.

It “could” be read and understood as him being a private citizen who, for reasons unknown, became the victim of unwanted attentions. This is problematic because “some” people say the ME community love targeting and harassing the good Drs, medics and researchers. Hmm.

It certainly does not read as a foreseeable consequence of being all over the media talking about not recovering from Covid.

Frankly as a woman on the internet I could tweet something about the cat and be subject to days of death and rape threats, that’s the internet for ya, full of people who want to say things.
 
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