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

[Jonathan Edwards]

I get the impression that she's someone who is politically astute. I don't always agree with what she's astutely trying to achieve though.

Politically astute in that she knows how to keep her profile high and that of the current primary care agenda. Not so astute if she actually wants to achieve anything of value. Primary care in its present form will disintegrate over the next decade, as it should. Nobody will want to work in it - they are already leaving by the thousand.

 

[Hoopoe]

It won't take long until long covid sufferers get "help" in the form of some therapy targeting some subjective symptom, like fatigue or anxiety, while little is done to understand what's actually happening in their bodies.

 

[Dx Revision Watch]

Things became a little heated between TG and some other professionals, this morning, on Twitter, around evidence and statements made in the Telegraph article and a number of posts by TG and others were deleted. TG then posted:

 

[chrisb]

Surely it could not have been so. It is a fact, well established and generally known, that it is patients who are abusive - and, even then, only some of them.

 

[Trish]

That's pathetic. Practically everyone on twitter gets abuse. That's the nature of twitter. If she doesn't like it, the remedy is to block the abusers or leave twitter, not give up on her professional job.

 

[Esther12]

Politically astute in that she knows how to keep her profile high and that of the current primary care agenda. Not so astute if she actually wants to achieve anything of value. Primary care in its present form will disintegrate over the next decade, as it should. Nobody will want to work in it - they are already leaving by the thousand.

Politically astute in that she seems to be skilled at playing the system to move it in the direction she seems to want - though I guess that I only have my assumptions about what she wants. I expect that one thing she wants is to minimise the embarrassment long-covid causes to those in medicine and avoid some of the most obvious problems with the way ME/CFS was treated. It could be that is significantly seen as a PR exercise though.

 

[Invisible Woman]

This is a heart sink tweet if ever I heard one. I say this as a fan of yoga - though I have been unable to physically practice asanas for a long time now.

The old, I did it while recovering from cancer it was wonderful.......

I've heard this said about so many things. Just because someone with cancer is physically able to do something without suffering consequences does not mean other people will be able to.

Many people seem to believe is some weird illness hierarchy with cancer right at the top. There are many different types of cancer that affect people in many different ways. Just because it's physically achievable to a cancer patient doesn't mean it's achievable for others. For example, my relative who is unlikely to last the year due to cancer had been able to go out, albeit accompanied & in a wheelchair, during some afternoons in the week when lockdown eased. In some ways, at that time, able to achieve things I am not. Yet there is absolutely no doubt that she is much, much more ill than I am.

Many people seem unable to grasp that someone can be very debilitated but not necessarily at risk of death & vice versa.

It's worrying that someone who is so involved at a high level with what may turn out to be long term, high levels of disability doesn't grasp that.

I may be over reacting to an off the cuff remark but I have heard this exact remark made many, many times since I became ill, usually when trying to encourage me to try yet another treatment that cost money & physical resources I didn't have. Ignoring that while they found it helpful, they were also aided by many millions spent in research, very knowledgeable medical staff & specialist support (no directive CBT for them).

Before you jump in with lead lined boots, please learn from your patients first and continue listening and learning from them as you find out what works and what doesn't together. Please leave your preconceived ideas, along with your coat, at the door.

**rant ends**

 

[ahimsa]

Many people seem unable to grasp that someone can be very debilitated but not necessarily at risk of death & vice versa.

This line is so important!

I had one friend who had multiple bouts of cancer (breast cancer, ovarian cancer). She finally died from it. During most of that time she was a lot more functional (able to work at least part time, needing less rest, able to socialize daily) than I was.

I'm not saying she had it easy. I'm sure she had symptoms that I did not have.

But it's just as true that I had symptoms and limitations that she did not have.

This idea - "If I had cancer and I could do it, then so can you!" - seems to be held by many even though it's quite wrong.

Very strange, and quite dismissive of all other illnesses and impairments.

 

[Dx Revision Watch]

That's pathetic. Practically everyone on twitter gets abuse. That's the nature of twitter. If she doesn't like it, the remedy is to block the abusers or leave twitter, not give up on her professional job.

Trish Greenalgh's Twitter profile reads:

Prof of Primary Care, U of Oxford. Abuse me, I block you.
https://scholar.google.co.uk/citations?sortby=pubdate&hl=en&user=8KQwEGcAAAAJ&view_op=list_works

She does block.

But I think by "But If I get abuse, I will drop this and move on to something else." she was referring to dropping the advocacy work she has been doing around "Long Covid" - not suggesting she would give up her professional job. And this comment followed on the heels of the somewhat heated exchanges between herself and some professionals, this morning.

 

[anniekim]

@Invisible Woman, I agree. The way some people with longCovid are describing how the illness is affecting them they seem to be describing the post exertional symptom exacerbation that happens in ME. If this turns out to be happening to them too then any doctors involved in longcovid need to educate themselves about it - a tall order I know as many of the doctors at the CFS clinics in the U.K.don’t seem to have done so. Trish G’s comment on her success with yoga after cancer suggests to me she hasn’t grasped it or she she doesn’t acknowledge it.

I read the info put up on the NHS website yesterday about what the longCovid clinics will offer. I find it concerning that the info on these newly announced longCovid clinics refers to fatigue but makes no reference to the distinct post exertional symptom flare that longCovid patients are reporting.

The info on the new clinics, screenshot attached, says amongst other things, the longcovid clinics will offer a physical assessment, which will include ‘diagnostic testing, to identify any potential chronic health issues.’ The info on the longcovid clinics mentions a CPET test but it makes no mention of 2 day CPET testing. As Trish wrote earlier this one day CPET test will probably be to assess lung and heart functioning. As we know a one day CPET test is of little use in assessing energy dysfunction as it does not show up the energy dysfunction that shows up on the second day in pwme and which may be happening in longcovid patients too. 2 day CPET testing would be one way to see if it is.

I fear as the clinics will not have the tools to recognise and identify this in the physical examination and if all other tests come back normal with the existing available testing then longcovid patients will be shunted across to the IAPT pathway with its focus on anxiety and depression which will be at best a secondary problem in some patients after having to adapt to a big change in health with an uncertain prognosis. So the longcovid clinics will make the same mistakes as the current NHS ‘CFS’ clinics


On a separate note, regarding Trisha Greenhalgh, it may have been mentioned on here, but Trisha G wrote an article in the BMJ last November and she references a 2011 article about militant ‘CFS’ patients with no context at all about the great harms Wessely's model of 'CFS' has caused. Someone told me she is friends with Wessely from their uni days.

https://blogs.bmj.com/bmj/2019/11/1...owards-an-institute-for-patient-led-research/

 

[anniekim]

Things became a little heated between TG and some other professionals, this morning, on Twitter, around evidence and statements made in the Telegraph article and a number of posts by TG and others were deleted. TG then posted:

@Dx Revision Watch, may I ask what were the evidence and statements in the Telegraph article as I don’t have access to it?

Edited to add - sorry @Dx Revision Watch, I have just seen the Telegraph article was linked to on this thread and it was not behind a paywall. Were other professionals complaining that TG stressed it may only about be about 1% of patients who go on to have longcovid symptoms after 3 months? My thought on that is as so many are getting CoVid 1% actually translates to a lot of people.

 

[Dx Revision Watch]

@Dx Revision Watch, may I ask what were the evidence and statements in the Telegraph article as I don’t have access to it? Thank you h

Sorry, I don't have access, either, and some of the Twitter exchanges about this were rapidly deleted.

 

[anniekim]

Sorry, I don't have access, either, and some of the Twitter exchanges about this were rapidly deleted.

No problem, thanks for replying. I edited my comment above to share I had now seen the link to the Telegraph article was given on this thread earlier and was not behind a paywall so have read it. It would have been interesting to know what others were saying to TG about her comments in the article but appreciate you don’t know as some of those tweets have now been deleted by TG.

 

[Dx Revision Watch]

Comment from Jennifer Rigby:

 

[Dx Revision Watch]

No problem, thanks for replying. I edited my comment above to share I had now seen the link to the Telegraph article was given on this thread earlier and was not behind a paywall so have read it. It would have been interesting to know what others were saying to TG about her comments in the article but appreciate you don’t know as some of those tweets have now been deleted by TG.

Yes, it's displaying in full for me now, but when I tried to access it, earlier today, it required a registration:

https://www.telegraph.co.uk/global-...sease/long-covid-can-really-grim-rarer-think/

 

[Dx Revision Watch]

Ah, don't you just love the NHS and "One-stop-shop/joined up/multidisciplinary care":

 

[rvallee]

Trish Greenalgh's Twitter profile reads:

Prof of Primary Care, U of Oxford. Abuse me, I block you.
https://scholar.google.co.uk/citations?sortby=pubdate&hl=en&user=8KQwEGcAAAAJ&view_op=list_works

She does block.

But I think by "But If I get abuse, I will drop this and move on to something else." she was referring to dropping the advocacy work she has been doing around "Long Covid" - not suggesting she would give up her professional job. And this comment followed on the heels of the somewhat heated exchanges between herself and some professionals, this morning.

It's been deleted so anyone knows what the debate was about?

 

[Dx Revision Watch]

It's difficult to piece together the exchanges as around half a dozen Tweets have been deleted:

 

[rvallee]

Ah, don't you just love the NHS and "One-stop-shop/joined up/multidisciplinary care":

Anyone else catch that phrasing between the asterisks is almost entirely identical to Sharpe's "identify all possible biopsychosocial problems", simply replacing BPS with 'chronic health problems'. It's presented as a single item, easy to check off, but it basically represents most of the effort, a huge task in itself. Because, again, what "rehabilitation" can there be when we don't even know the problem?!

In response to Greenhalg's tweet about yoga, some yoga teacher asked about "the rehabilitation". REHABILITATION FROM WHAT?! We can't even define the nature of the problem, let alone all potential health problems. No one has yet actually defined what is being rehabilitated besides lung function, which isn't even clear is a problem in most cases.

People seriously need to press them on this, to clarify what they mean. Because at a distance it looks like what they mean is deconditioning and if that's so they need to be required to define and explain what they are basing this on and how it conflicts with the linear passage of time given symptom presentation, how even many with mild illness, who were never bed-bound, suddenly, within days, and, again, WITHOUT BEING BEDBOUND, began a cycle of fluctuating deconditioning despite meeting exactly none of the requirements for actual physical deconditioning.

 

[Dx Revision Watch]

There are some exchanges under this thread about concerns about the Telegraph article:



but both Greenhalgh and @LaurieStras had deleted a sub thread of posts before LaurieStras and TG patched things up:



Sorry to be vague but I didn't get to read posts that have been deleted, just the remaining stuff, and noted that things had evidently got heated and posts taken down.