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

[chrisb]

Interesting to see the Ross Morriss quote. There is a chapter by Salkovskis and Bass on Hypochondriasis in a book on CBT by Clarke and Fairburn. They make it pretty clear that hypochondriasis and health anxiety are pretty much the same. What makes it interesting is that their oldest citation seems to be Pilowski in 1968. Those who have been paying attention will recall that David, Wessely and Pelosi announced in 1988 that the concept of hysteria in ME was now passé and replaced by Abnormal Illness Behaviour as described by Pilowski in 1969. That seemed to include pretty much everything you could think of.

Its a small and highly interconnected world for the quacks.

Incidentally we never again heard of Abnormal Illness Behaviour in ME or CFS. I think it found a home in MUS.

Oh, and Goldberg wrote the forward to the book-by Pilowski.

 

[wigglethemouse]

I would have thought this was a great opportunity to gather a group of doctors, nurses, and scientists who have #longCovid and have them involved in a study to gain a better understanding of the condition(s) they have, what works, what doesn't.

I keep thinking of Dr. Nina Muirhead who once she understood what was happening to her body and how the advice she got was detrimental, she became a very powerful advocate. Paul Garner is a scientist who is starting to travel along the same path. I would love to see one of the big UK ME charities engage in connecting these professionals with #longCovid - Perhaps a special online Conference organised by the CMRC medical group?

OMF and SolveME have their own initiatives to engage in the US. What are the UK charities doing?

 

[rvallee]

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.

Oh they have gotten better at the lying part, everything else being the same. But you went through this alone, as most of us did, without being able to share the experience with others or make sense of those "other symptoms" that actually make up most of the illness. Gaslighting a population only works when people remain isolated from one another. If you have someone else reporting that they saw the husband light the gas light, the illusion disappears quickly.

This is the key difference. The post-COVID community is communicating extensively and will see through the BS very quickly. Some will be content, probably the mildest cases who would have slowly improved regardless, but there will be those who will dig deeper and see the underlying message. Work will make demands. Kids need parents. Obligations pile up. Without improvement people will be angry and share that anger.

It may take some time, but lies only go so far with some people. Those who don't recover will be pissed, just like us, but unlike us they are organized right from the start. Especially as this intends to be cheap, it will be largely self-directed online. That was the whole point and the services can't actually cope with this massive influx of patients so it will be completely unresponsive to complaints.

 

[rvallee]

I'm not sure where else to put that...

https://www.dailymail.co.uk/news/ar...MBERTON-drip-drip-nagging-damages-health.html

The relevant section is at the bottom, various topics on this thing and it's not related to the title. The article is not really interesting and holy crap there are so many ads on the DM site, but this last bit really emphasizes the failure of the BPS approach in probably the most perfect way possible:

One in three who recover from coronavirus could be harmed for life, with psychological problems, as well as physiological effects, such as long-term damage to their lungs.

Two of the long-term issues that are emerging are anxiety, caused by the struggle to breathe, and chronic fatigue.

Yet these are areas of medicine that receive very little attention despite the fact that Chronic Fatigue Syndrome (CFS) affects about 250,000 people.

Services for them tend to be run by psychiatrists who help with complex mental and physical difficulties, but specialist units are few and far between.

So I was pleased to hear last week that the world’s largest genetic study into CFS is to be launched in the UK after receiving £3.2million of funding.

Given the number of people afflicted by coronavirus, there are likely to be tens of thousands battling the after-effects.

We need coordinated specialist CFS services to ensure they get the right treatment.

I'm going to boldly suggest that struggling to breath is enough of a problem on its own without having to arbitrarily suggest the "resulting", presumed without evidence, anxiety is important.

But more than anything is the last part:

We need coordinated specialist CFS services to ensure they get the right treatment.

About two dozens such "specialist services" have been operating for nearly two decades, having process thousands of patients. And they are so utterly incompetent and irrelevant that people actually suggest "hey, we should do that" thing which has already been in place for decades.

 

[JemPD]

I find that Moss Morris talk incredibly patronising... I mean for goodness sake, i was coughing this morning, covid crossed my mind but i dismissed it. I didnt go on that cycle of getting anxious about it & focussing on it etc etc. I have never gone on that cycle over a symptom. I find it unbelievable that most people don't just explain their symptoms away to themselves, search for all other things it could be before assuming the worst.
I appreciate health anxiety is a thing & i feel compassionate towards those who suffer from it, but this is what gets up my nose about Moss Morris et al's theories - they just assume they know what we are thinking, they assume something similar to this about ME/CFS and it couldn't be further from the mark (personally speaking at least). Something has to get really bad & blindingly obvious/impossible to explain away as something minor/trivial, before i will accept that it is the bad/serious option.

err.... just because you were a bit daft and started panicking that you might have covid because you'd been coughing a bit Rona, doesn't mean that's most people's experience. It's like Mr Vogt with his tinnitis that he got himself worked up about... i do wish these psychs would stop extrapolating their own experience to everyone else. It may be a common experience, but equally common is the direct opposite, and that's the one i hear the most often by far.... "i brushed it off as ____", "i couldnt believe it was actually _____ i'd attributed my symptoms to (something minor)" etc etc etc

Edited to remove misleading emphasis

 

[Dolphin]

I'm not sure where else to put that...

https://www.dailymail.co.uk/news/ar...MBERTON-drip-drip-nagging-damages-health.html

The relevant section is at the bottom, various topics on this thing and it's not related to the title. The article is not really interesting and holy crap there are so many ads on the DM site, but this last bit really emphasizes the failure of the BPS approach in probably the most perfect way possible:

I'm going to boldly suggest that struggling to breath is enough of a problem on its own without having to arbitrarily suggest the "resulting", presumed without evidence, anxiety is important.

But more than anything is the last part:

About two dozens such "specialist services" have been operating for nearly two decades, having process thousands of patients. And they are so utterly incompetent and irrelevant that people actually suggest "hey, we should do that" thing which has already been in place for decades.

Dr Max Pemberton had a run-in with the ME community a number of years back. Can’t remember the details at this stage.

 

[rvallee]

Trudie Chalder:

I've decided to listen and what's remarkable is how utterly superficial and generic it is. She has been "researching" this for decades and basically has no substance whatsoever to offer. It's impossible to tell what she means when she uses the word fatigue because in this discussion it's used to mean all sorts of different things that skirt the physical exhaustion, including it mostly by unspoken association, but clearly defining her concept of "fatigue" as basically boredom.

As a researcher this is one thing. As a professor, boy this is embarrassing. Something's clearly wrong in a system that allows someone so superficial to become an influential professor. I don't get it. Is it an old aristocracy thing? Like people getting through advanced education because of family privileges? Sharpe is the same, utterly superficial and devoid of substance, incapable of learning from experience. This embarrasses not only the entire medical system that employs her but frankly the education system that elevates vapid people to full professors.

It's an old Family Guy joke but there are so few occasions to use unironically: this is shallow and pedantic.

 

[rvallee]

err.... just because you were a bit daft and started panicking that you might have covid because you'd been coughing a bit Rona, doesn't mean that's most people's experience.

I watched it and frankly this part looks a lot like projecting her own issues. Like you most of what she describes is the exact opposite of how I think, it could not be any more wrong, misses 100% of the shots they take, which is significantly worse than a coin toss and simply unacceptable for an "expert".

 

[Hutan]

Trudie Chalder:

Ugh. She's says they are going to be measuring cortisol. 'Cos, you know, cortisol has something to do with stress. And the findings from cortisol studies in ME/CFS have been so useful (sarcasm).

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

Yes. If we believe that a large part of the Covid long tail is post viral fatigue syndrome/ ME/CFS (as I do) then the likelihood is that a substantial percentage of people have the symptoms at 3 months, a lower percentage at 6 months and an even lower percentage at 1 year. So, more people than not will get better over that first year. That means that, whatever treatment they try, quite a number will report that the treatment helped them.

For example, with my family where my daughter recovered over a couple of years while my son and I didn't: If it had just been my daughter in our family and she had followed a treatment programme at the same time as she was recovering, then we might have attributed her recovery to the treatment. She did actually try to keep on with sports and activity during that time (as did my son, who hasn't recovered). So, in her case, a programme of gentle exercise would not have stopped her recovery and perhaps our family would have ended up being GET believers.

I think it's helpful to send out the message that a significant proportion of people will recover in the first couple of years on their own, and that the vast majority of people don't need to be told that they need to start moving again or be offered CBT courses - people naturally want to be active. To the contrary, in the current culture where exercise cures all and people like Chalder get listened to, people may need advice to monitor their symptoms and activity levels, and not put themselves through unhelpful efforts to 'get fit again'.

Sometimes the GET brigade are fought with suggestions that rest is the answer. I think that's not nuanced enough when many people with post-viral fatigue syndrome do recover while being somewhat active.

 

[Robert 1973]

I sense that Debby Bogaert (professor of paediatric infectious diseases at Edinburgh University, who wrote a Guardian article on her experience as a post-covid “long-hauler”) may be on a similar journey of understanding to Prof Garner:



Although I agree with Prof Bogaert, I’m not sure if she understands that people with ME/CFS aren’t very keen on the label of chronic fatigue syndrome for similar reasons.

In fact, Hancock refers to “post-viral fatigue syndrome”. I wonder where he got that term from. Might it have come from those who consider themselves to be experts in treating post-viral fatigue and ME/CFS who have their eyes on that £8 million?

 

[ladycatlover]

Dr Max Pemberton

Dr Max Pemberton... At bottom of the linked article. I'm not sure exactly what he's trying to say here. I'm always suspiscious!

https://newscolony.com/dr-max-pemberton-why-that-drip-drip-of-nagging-damages-your-health/

One in three who recover from coronavirus could be harmed for life, with psychological problems, as well as physiological effects, such as long-term damage to their lungs.

Two of the long-term issues that are emerging are anxiety, caused by the struggle to breathe, and chronic fatigue.

Yet these are areas of medicine that receive very little attention despite the fact that Chronic Fatigue Syndrome (CFS) affects about 250,000 people.

Services for them tend to be run by psychiatrists who help with complex mental and physical difficulties, but specialist units are few and far between.

So I was pleased to hear last week that the world’s largest genetic study into CFS is to be launched in the UK after receiving £3.2million of funding.

Given the number of people afflicted by coronavirus, there are likely to be tens of thousands battling the after-effects.

We need coordinated specialist CFS services to ensure they get the right treatment.

Source: Daily Mail |NewsColony

 

[Milo]

Get psychiatry out of COVID They have nothing to contribute.

 

[Saz94]

Off topic, but I was reading a novel yesterday featuring an evil organisation called 'Mors Mortis', and I kept reading it as 'Moss Morris', smh...

 

[obeat]

I'm not sure where else to put that...

https://www.dailymail.co.uk/news/ar...MBERTON-drip-drip-nagging-damages-health.html

The relevant section is at the bottom, various topics on this thing and it's not related to the title. The article is not really interesting and holy crap there are so many ads on the DM site, but this last bit really emphasizes the failure of the BPS approach in probably the most perfect way possible:

I'm going to boldly suggest that struggling to breath is enough of a problem on its own without having to arbitrarily suggest the "resulting", presumed without evidence, anxiety is important.

But more than anything is the last part:

About two dozens such "specialist services" have been operating for nearly two decades, having process thousands of patients. And they are so utterly incompetent and irrelevant that people actually suggest "hey, we should do that" thing which has already been in place for decades.

I'm writing a letter of complaint/ enlightenment to Dr Pemberton.

As a doctor I think it's my Hippocratic duty to educate other doctors. Adding Debbie Bogaert to the list.

 

[chrisb]

I sense that Debby Bogaert (professor of paediatric infectious diseases at Edinburgh University, who wrote a Guardian article on her experience as a post-covid “long-hauler”) may be on a similar journey of understanding to Prof Garner:

It makes one wonder whether some of these doctors are at all familiar with, for example, Peter Behan's use of the term Post Viral Fatigue Syndrome which recognised all sorts of symptoms. They seem to think it was just long lasting fatigue after a virus.

 

[chrisb]

I'm sure TC will advise "completing the agreed activity regardless of the symptoms which occur. This is because although there is initially an increase in fatigue and other symptoms, a reduction will occur as tolerance to the activity builds up."

From 1989. It still hasn't worked for me after forty years.

 

[Sly Saint]

I'm writing a letter of complaint/ enlightenment to Dr Pemberton.

As a doctor I think it's my Hippocratic duty to educate other doctors. Adding Debbie Bogaert to the list.

As doctors surely they must be aware that post-covid patients are just going to be added to the ever increasing list of MUS and will just be directed to IAPT for CBT(?)

 

[Andy]

What are the UK charities doing?

Trying to survive?

There was hardly a lot of funding for them under normal circumstances, then COVID-19 hit, impacting heavily on fundraising possibilities and many will have had to cut costs just to remain in operation. COVID-19 also brought a whole lot of pressure on the patient community, so the charities that offer social support will be trying to help those people who need it with reduced resources already. Add to that continued participation in things like the NICE guidelines review, DecodeME, the ME/CFS Priority Setting Partnership etc and our charities will be doing well if they are able to engage more widely. However, we do know that one high profile COVID-19 patient Prof Paul Garner is in touch with the MEA, and that both Charles Shepherd and Sonya Chowdhury have been on local BBC channels recently talking about how viral infections can lead to ME.

If you feel that there is something specific that they should be doing then my suggestion would be to contact them directly - if it's possible and they haven't thought of it already then I'm sure they would welcome the input.

 

[Esther12]

I'm writing a letter of complaint/ enlightenment to Dr Pemberton.

As a doctor I think it's my Hippocratic duty to educate other doctors. Adding Debbie Bogaert to the list.

I wouldn't bother - he has a record of promoting spun PACE results and then presenting complaints about this as anti-science harassment.

 

[Sly Saint]

View attachment 11416 View attachment 11417 View attachment 11418 View attachment 11419

I was just looking at the wikipedia entry for peptic ulcer:

Stress
Stress due to serious health problems, such as those requiring treatment in an intensive care unit, is well described as a cause of peptic ulcers, which are also known as stress ulcers.[3]

While chronic life stress was once believed to be the main cause of ulcers, this is no longer the case.[20] It is, however, still occasionally believed to play a role.[20

what is not made clear is that the 'stress' that causes stress ulcers is

A stress ulcer is a single or multiple mucosal defect which can become complicated by upper gastrointestinal bleeding or physiologic stress.

(pop-up)

and the role of 'chronic life stress' citation is a paper
"Based on a Lecture delivered at a Festschrift for Professor John Russell in Edinburgh on 1 July 2009"
by G. Fink, Mental Health Research Institute, Parkville, Melbourne, Victoria 3052, Australia

which is largely concerned with cortisol levels in PTSD patients, but then adds a bit about 'stress ulcers' again without aknowledging that they are caused by physical stress (he also cites his own book as ref.)