United Kingdom: Independent SAGE

Sorry if this is really obvious but what was Fiona Fox hoping to achieve by going on with Indie Sage?

 

FWIW I replied to Indie Sage on Twitter:

Maggie W
@ladycatlover

May 6

Replying to
@IndependentSage
@jameswilsdon
and 4 others
Very disappointed you giving a place to Fiona Fox. Do you know how badly the SMC treated people with ME/CFS? I imagine they'll be just as foul with people with Long Covid. They prop up the BPS cabal of Wessely, Chalder, Sharpe and Crawley. They are no scientists.

 

Judging by the prominent position of her new book on the top shelf of her bookcase, I imagine it was purely a book promotion opportunity.

 

A bit late to post but Independent Sage are "This week we are having a session on Long Covid and its impact. Send us your question via DM or email it to us on questions@independentsage.org See you all on Friday at 1:30pm."

 

I haven't watched that presentation yet and this may have been covered. Obviously, I don't doubt vaccination has helped immensely. I presume that at least some of the effect of reduced numbers in 2022 is due also to the large jump in 2020. Ie that some of the more vulnerable that might otherwise have died in 21/22 (stochastically) had already died by 2020.

 

https://twitter.com/user/status/1638819888058834946

 

https://twitter.com/user/status/1639286620439363588

 

Ironic, that Greenhalgh makes the same argument she dismisses with us, then Topol trashing the BPS model as nonsense, that was great. Not sure if he knows Greenhalgh is a strong promoter of it.

Then discussion goes directly to, well, what Greenhalgh and her buddies did to those of us with ME/CFS. Vogel says out loud how she doesn't understand why someone would do that, and yet they could simply ask, there was someone in the top-right corner who is very much enthusiastic about it.

I'm not sold at all on this being a change in attitude. This isn't a minor disagreement, it has been violence. The violence, ugly and immoral, has to be addressed.

It's been agonizingly slow to even get to the point where this conversation can be had, but when someone like G. is involved, there should be a lot more direct confrontation. None of this has been passive, it was all a product of choices that continue, to this day, to be made.

The shift in attitude is one away from widespread oppression. It will be as awkward as ending a civil war. It's not easy to have a conversation with a neighbor who voted enthusiastically for violence against us, but this cannot happen without recognizing what happened, how this violence was a choice and that we denounced it all the time. Because it's not stopping any time soon while people still dance around it.

 

I don't know if direct confrontation with TG is the best way of handling this (I think it would backfire in the end), but it's unclear to me whether people know the history or context of TG. This aspect is worrying; how it should be handled is a different matter. I don't trust TG on these matters and people should be wary of unwittingly giving her and potentially others ammunition of any kind.

She does not seem like the kind of person who will admit her mistakes and take responsibility for any wrong actions, and so there is no point in chasing that.

 

I don't mean confronting her about her behavior. I don't care much for that, people are weird and there was intense peer pressure. I mean the whole scandal. It has to happen eventually and people who took a stand on one side can't gloss it over. Millions of lives were and continue to be ruined. This is not some minor disagreement, it's a major disaster of choice that people chose and imposed on us.

Of course she supported it, and that's awkward, but there's no moving from one place to the other without a lot of discomfort. That means exposing the whole thing and mostly, what I mean by confrontational, is not accepting evasive BS answers. This was all a product of awful choices and there has to be accountability.

One, or even many, people admitting they were wrong is of no importance. What matters is that moving forward, this nonsense is over. Otherwise it's the same old speaking one thing in public, then acting the opposite in private. No need for that, we've had that already.

And obviously people who can't admit mistakes don't have any business being involved in this. It was basically nothing but awful mistakes.

 

Transcript:
Trish Greenhalgh: Some people watching this program may be thinking, "Well...long Covid's all in the mind." I have doctors say that to me at least once a week. People say it on social media. "This is functional, this is not a physical condition." As one of the world's leading researchers on long Covid, what would you say to those people?

Eric Topol: Yeah, I think they don't get it. I mean, they're just completely either in denial or...you know, I'm not sure...what they are trying to...basically, dismiss something that is so important. It shows no ability to empathize with the people who are suffering.

And to be able...there was this...I'm sure you saw it: This recent proposed model of this kind of bio-social, biopsychosocial. And you know, it was absurd. And fortunately, Kiko, Iwasaki and Putrino came back with the better model, which is, this is not a functional/psychiatric illness.

Julia Vogel: There is a lot of evidence that's summarized in our review about the physiological components of the disease. Things like microclots that you can literally see in microscopic images. It's absolutely not psychosomatic. The other piece I just wanted to comment on related to this is: This is built on decades and decades of dismissing disorders that are similar to this, like chronic fatigue syndrome and others. And so, I don't know what it is about the diseases that make people want to dismiss it.

It is endlessly frustrating to me, because for some reason, when we have the idea of people dying or being on a ventilator, it's very dramatic and people want to take action and avoid getting that kind of illness. But if you have someone who is bedbound, suddenly, it's laziness. It can't be that that's physiologically caused. And I don't understand why that's the case, but I think if people really deeply understood how life-changing and how devastating this illness is, they would certainly be a lot more scared of Covid in general, and they would be helping the uproar to support the clinical trials that we really need to be able to treat the folks that are suffering.

Edit: Break into paragraphs

 

In case there is any doubt what is meant by "functional" when used by clinicians.

Great responses from Julia Vogel. Small portion of the transcript earlier to @RedFox's —

Trish Greenhalgh: "What would you like to see in the ideal Long Covid clinic?"

Julia Vogel: "... and we are really lucky in the community to have decades of research on myalgic encephalomyelitis - ME/CFS, and POTS ... to be able to build on".

She continues: "... are you actually doing harm with the treatments that you're trying? You know we know that graded exercise therapy in particular does a lot of harm and is still being recommended by a lot of physicians who don't understand long Covid and particularly ME/CFS."


Also Eric Topol's smirk as he dismisses BPS as absurd is great. With nice editing cut to Binita Kane nodding in agreement.

 

Thanks @Adam pwme, I read your post in time to watch Indie Sage on Friday. It was a very interesting watch.

https://www.youtube.com/live/d8zwQ0-uwvE?feature=share

Meanwhile, pwLC are now going round in circles - ‘off label’ medications were suggested in that Nature article, yet anecdotally, I hear that patients cannot access these meds because even if

GP would like to prescribe - they are not authorised to do so, so asked…
LC clinic - but they have no prescribing medics on the staff, so tried…
ME/CFS clinic - ditto, have no prescribing medics.

Result - patients are just left with long term, chronic condition with worsening QoL because Govt/NHS England/MRC will not fund biomedical studies (LC and ME/CFS).

 

How did Eric Topol suddenly become a leading expert of Long Covid since nobody knows anything about it?
Or Iwasaki or Putrino for that matter?
And what is all this research on ME to build on that Vogel is talking about?

It is good to see the BPS approach being ridiculed but I don't think it helps to have this sort of vacuous Twitter-based instant-science-expert approach either.

Yes you can see 'microclots' - that weren't there in the patient because the sample has been centrifuged. Let's get some proper science into this. I am always happy to be proved wrong but inappropriate anticoagulation is just as harmful as inappropriate exercise.

 

Twitter. But I'm glad there is someone out there making some of the points they make, as it's a truly dire information environment out there generally. I genuinely think some good can come of it.

 

The current new thing being trialled by the community is nicotine. I don't think it will last long but this is the kind of thing that happens when professionals are negligent.

I'm pretty sure we're not hearing the worst of it. This is all going the way of the AIDS crisis with having to source medication from abroad. Except this time with basically zero medical supervision. It's like a system that learns in reverse, it does worse the next time around.