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

About the first point--I didn't take that to mean it was part of Garner's tweet but rather @FMM1's interpretation of the implied message--in other words, it was commentary. It wasn't intended to be read, I don't think, as being what he said literally. However, I agree that could have been made clearer in the tweet.

The second point--about his messianic example--is clearly commentary and seems pretty hard to dispute by saying "he didn't say that." No one would read it and think he himself said it literally. But it certainly seems like a fair interpretation of Garner's position. He might or might not actually feel that way, but that's the impression many reasonable people would have to what he lays out.

 

He dismissed our lived experience and was no longer interested in engaging with the ME community after he recovered. He pretty much threw us under the bus after all the support he was given early in his illness, so not surprising that pwME interpret his tweets/pics that way.

 

I don't know.

It's easy to point to 'reasonable' people whose impression of the complaints of critics of the PACE trial does not reflect what those critics have actually said, and often seems to really just reflect their prejudices. I guess that's commentary too, but I don't like it when it's aimed at me.

I think that going beyond what people have actually said and responding to ones impressions of someone else's position is very often counter-productive, and certainly has been when ME/CFS patients do it of authority figures. Authority figures themselves seem to get rather more leeway with this stuff.

There are understandable things to this sort of reaction, but I still think it's a bad idea. Part of the problem we face is that so many patients have been badly treated in so many ways that it's often quite understandable for them to respond in counter-productive ways.

I think that a lot of the behaviour from Garner that I think is unreasonable and harmful is also 'understandable'. Also, I'm sure Garner thinks some patients have been dismissive of his lived experience.

 

Many pwME have been emotionally harmed by the BPS and are venting their frustration. I don't fault anyone for reacting that way, even if I don't agree with it.

 

Which comment? I just replied to a post here. I don't know what's happening on twitter right now and wasn't referring to that.

 

I suspect that when people use Twitter and invited articles in journals for self-advertising and self-pity the response can often be irritating!

 

If I advertise something with words and a picture ---- then OK in some cases the picture is purely random --- ill thought out or whatever
I'm not of the view that [EDIT - it is] in this case
We can each have different views of an add

 

to me, his message and the picture depict the LP mantra........"Get the life that you love,Now".......
the title of one of Phil Parkers books.

 

Noticed a post on Twitter yesterday where someone queried Paul Garner's timeline for being "ill" --- apparently he was doing 5K walks during the alleged period of illness --- Garner didn't seem pleased ---

Not uncommon for folks to take time off, due to ill health, in the run up to their retirement ---

 

It's pretty shocking to see how despite the millions suffering from LC, there is still so very little advocacy going on. At the most I'd say it doubled the ranks of patients active on social media spreading awareness. From dozens of responses to... a few dozens more.

The responses are overwhelmingly one-sided. It's absurd that medical professionals can still think they're right when all of reality is telling them otherwise. No wonder Wessely was so obsessed with strength of beliefs, it's all projection, they hold their beliefs firmly and at all costs, while we have no such things. What a mess.

 

It may be that many people with LC think the medical profession will come to their rescue in the near future and all they have to do is wait.

 

They really do. I am also horrified how trusting they are and how many are ignoring other patients telling them to avoid exercise. One yesterday turned up in the CFS sub asking, having crashed themselves with exercise twice to severe condition with a treatment given to them by a Long Covid clinic, how they could get back to normal. I mean at that point medicine has already ruined their best chance, they weren't taking the stop exercising as an answer so that is someone who is seriously going to be regretting their choices and the appalling treatment they received in the near future. Its endemic and nothing has been learnt by medicine at all, even now the vast vast majority talking about rehabilitation, they will create massive cohort of severe ME patients.

I feel really helpless watching it play out again and again.

 

It's genuinely scary. I dip into LC subs periodically and saw someone the other day ask if they could/should exercise themselves so much to the extreme that it resets their body.

Needless to say, I suggested that they didn't and go to the opposite extreme and just rest and pace. The message just isn't getting through to the masses it seems.

 

There was a lot of that at first. It was mostly that in the first year. So much hope. People expect experts to do their thing, it's self-evident.

Haven't seen much of that hope in at least a year. Maybe the newer ones, most LC cases will last for a few months so it's continuously renewed.

Even the "research takes time" take is barely getting voiced anymore, seeing how little of it there is, how mismanaged the NIH program is, and how absolutely no progress has happened yet.

No, there really isn't much of that hope left. Medicine has made it loud and clear enough for that message to be received.

 

The Long Covid community has kind of set themselves up for a lot of suicides. By pushing two perspectives mostly, 1) You will get better and 2) researchers will cure you there hasn't been a lot of space for people to just grieve and accept their new disability. Now they are facing that stark reality and the toxic positivity has kind of stopped them making necessary adjustments in their lives to survive. Its excluded strongly those people who weren't getting better and that is pretty damaging. It has and will kill people and still is. Toxic positivity annoys me because its extremely dangerous as a brain worm and idea, the very concept short circuits people at some point in the future when it turns out everyone who was their support lied to them.

 

Maybe they're too tired and their carers are too busy, which is the same reason why ME advocacy was so ineffective for decades. Liking tweets isn't going to get anyone anywhere, but that's about all many sufferers have the energy for.

 

And when many do have some energy, they use it in expressing, often at length, how bad the situation is and how someone should do something about it. Which on one level is understandable, but on an advocacy level, that energy potentially could have been put to a constructive use.

And even now, we see very very few pwME engage in advocacy efforts, even very small ones. I suspect that when you have to effectively live hand-to-mouth energy-wise, expending energy on advocacy efforts that are unlikely, in themselves, to immediately 'reward' the person taking action can very easily be seen as a waste of their personal energy.