UK - NHS England online tool and clinics for long Covid.

Trudie Chalder:

https://www.youtube.com/watch?v=yHmBOA32-LI

 

@rvallee how are the people in the covid forum on reddit taking this?

 

Early wording suggests this is basically the FINE model. Not surprising as this is what the NHS uses internally.

Sometimes public humiliation is the only way to move forward. It's the dumbest possible way to move forward but then the dumbest possible way is what was chosen to begin with.

This looks to be the first such big profile program, which will draw a lot of international attention. Just plain hubris. A completely non-responsive approach to medical care truly is as dumb as it gets.

 

It mostly tends to be the first point of contact, after which people move on to the Facebook or Slack forums so it's unlikely to get a lot of discussion there. But this is just recently announced and it's low on details so it will take a while for the info to spread. It's definitely not going to be received well. I'm still reading it every day so I'll report if I see things.

Anyone on Facebook looking into the groups? I'm not creating an account just for that. I've been on the lookout for other forums but it's mostly by invitation or Facebook. Maybe I should check the Slack thing...

 

Looks like Rona Moss Morris is playing a leading role in this (for those not familiar with RMM, this is not good news):

https://twitter.com/user/status/1279776338283560960


A lengthier document here, with CFS/PVFS being notably absent:

[edit: I'd assumed this document was part of the same project, as I misread the thing linking to it - @slysaint pointed out that this is for 'After-care needs of inpatients recovering from COVID-19' - making that omission of reference to CFS/PVFS less notable imo. It could be that this is from the same group, but who knows?] https://www.england.nhs.uk/coronavi...ts-recovering-from-covid-19-5-june-2020-1.pdf

No idea who wrote that, and the references seem a little sparse to me.

 

Some people are easily satisfied. Just remind me, what do they call that thing which acts as a conduit for channeling effluent?

 

@rvallee Why do you think people won’t be happy with it? Do they already know about the exercise issue & harms?

At the beginning before I knew anything about ME, I really believed in the exercise & psychological help 100% and was happy that there was “treatment” it’s only after I deteriorated with GET that I looked into it. So I’d be surprised if most or at least some aren’t happy that there seems to be some kind of plan to “help” them.. and that’s the worry

 

My guess is at least some of those people this service is aimed at will already have automatically done 95% of the things they will be advised to do by the service.

As those things didn't work for them, they need further help. They may go along waiting for the aha moment in the process that takes them beyond the point at which the seem stuck. The aha moment that doesn't come.....

There is little more frustrating when you have researched and experimented yourself, tried and tried again, then sought expert help only to discover the experts knowing no more than you do assure you that you "just" need to do what didn't work before once again.

 

It does strike me that NICE might be on a sticky wicket here.

This is a virus we know little about,despite all the guff. NICE have been made aware that there is a large group of patients for whom exercise is not the answer & neither is CBT.

The deniability window is shrinking.

 

this appears to be only for those who had hospital treatment
"After-care needs of inpatients recovering from COVID-19".

so just the tip of the iceberg.

 

Thanks for pointing that out. I'd misread two different things so ended up with the wrong idea about that document and when it was published. Have now edited my above post.

 

Sally Singh was one of Nikki's supervisors for her PHD and so we have contacted them to ask more about the service. They also know about pvfs and ME as Nikki has spoken to them about it and they also attended one of our webinars so fingers crossed but rest assured we are on the case and trying our hardest

 

The post-COVID community has pretty much immediately identified the impact of exertion and the relapsing-remitting course, so any advice to exercise will definitely be poorly received, as with us most have already tried and failed.

Far too many reports of people who thought they had mostly recovered and relapsed after doing a bit too much, they already understand how fragile recovery is. I pretty much expect the "boom and bust" crap to play a big role and for people who were running a marathon per week a few weeks ago now collapsing after walking for a few minutes, it will simply sound ridiculous. As it does with us but the fact that it is so immediate, that describing a few weeks of a mild case as being deconditioned, is downright absurd.

But mostly the obsessive focus over fatigue will look stunningly incompetent. "What about all the other symptoms?" will definitely be a widespread reaction. Lots of tachycardia, breathlessness and dizziness. Neurological symptoms are very prominent. Lots of GI symptoms too, which I assume will likely be fobbed off on the stupid commercial IBS thing Chalder invented at KCL. "Ignore your symptoms" will not be well received.

I think that some people will be content with it. Those who are well-connected absolutely will not. There is a good reason Wessely and his cult flagged support groups and patient organizations as a problem. Given the diversity of cases, the range of symptoms and severity, one's experience is not a good guide of whether this makes sense, it's only in talking with others that you get an appreciation of the problem and how this model is a complete fantasy.

 

The Chalder crap could sound perfectly credible to nonpatients in important positions like journalists and government officials. Respecting mental health is good, right?

 

https://www.youtube.com/watch?v=jPvTv8bl9vk

https://twitter.com/user/status/1279823405504659457

 

LongCovid doctor " let's keep an open mind about the pathophysiology and involve patients in study"

He has a lot to learn!

 

Thanks @Grigor, but what a load of B0XXXcks.

Likens it to anxiety in lockdown. She really is a piece of work.

 

@rvallee I’m sorry but I don’t share your enthusiasm..
I would say I’m an intelligent person. when I embarked on the GET course; I had already fallen ill from mild to moderate to severe in a space of a few months from pushing myself. That was my onset. And after that, I seemed to be slowly recovering due to a period of rest and relaxation, very gentle stretching. That’s when I embarked on the GET course.

But the new GET/CBT course was nothing like just . It seemed new, seemed to make sense - it was about the booms and bust, but it wasn’t about just fatigue; Infact, a lot of it was about there’s a lot of “weird symptoms”, but more that there isn’t a hardware problem it’s a software problem. You know you have the weird symptoms but dont focus on them. I also knew about the remitting and relapsing part, infact my CBT therapist made a point about that - she seemed to get it. I rest when those came, infact they told me it’s fine to rest more and meditate more... but then I increase the walking and other activities. It gets inside your head & you start questioning yourself as well.. it really does. It stays with you.

The GI symptoms I didn’t really explore with the therapist but I have a long history of unexplained GI symptoms, and a long history of gaslighting also, as well as Learning about the anxiety-gut connection.. so even if they had said something about it, I would have agreed at that time.

And actually even having gone through that, I did graded exercise with another physio as well, he was a “specialist” apparently, 2 years after that.. he said it’s a different way of doing it.

As well as an online course for this sort of stuff just a few months before that.

Then again, a “paced” version of GET a year after that. Just before I started coming on this forum and got all your advice.

So I did this 3-4 times formally.

This stuff is slippery, it’s insidious, it gets to you. Maybe the only bright side is that there are prominent patients who seem inclined not to be gaslighted from the start like Garner , but having gone through it - I don’t know maybe I’m just more inclined to be gaslighted or something, but I was susceptible not just once but three times. You want to believe them.

I just believed that this was the time it would work, a different way of doing it.? After all, they’re doctors... the professionals...was my thinking. I had it from all angles. Even from the fibro clinic I was told to attend.

(edited to add last paragraph).

 

Maybe another thing, as you say is the support groups. But surely that’s only a fraction of the real cases. What about the people who aren’t in support groups & just do it because that’s the national health advice.

On the other hand... the outcry due to the prominent patients (like Garner, MPs), as well as collective pressure..I have some hope, may end up being the downfall of the CBT GET paradigm...