BPS attempts at psychologizing Long Covid

We have tiger repelling rocks, of various types, that work, mostly.

The trick is to make them really quite large.

The biggest were left lying around the middle of Europe a while ago - quite effective, although it's rumoured the odd elephant has got through, elephants aren't tigers.

Also effective against dragons, manticora and dodos.

Not goat proof.

but then who ever heard of a goat repelling rock, that's just silly.
 
rvallee said:
anyway the "official" BPS brigade has formally promoted the SMILE trial so they are very much in favor of the LP for ME.
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From the "Recovery Norway" website:

Rona Moss-Morris, Professor of Psychology as Applied to Medicine, Head of Health Psychology, King’s College, London, UK:

“We can learn a lot from these stories about recovery from CFS – look forward to more”.

Vegard Bruun Bratholm Wyller, Professor, Institute for Clinical medicine, University of Oslo, Norway:

“The organisation Recovery Norway gives a voice to patients who – in different ways – have completely recovered from chronic fatigue syndrome (CFS/ME). This is very important: CFS/ME is often seen as a hopeless condition, something that increases the burden on patients and their families. The fact that there is actually good hope of full recovery is therefore very important to get across to other CFS/ME sufferers, to health professionals, to health government agencies and politicians, and to the general public. In addition, the stories of the Recovery Norge members are very interesting from a scientific perspective, and can serve as a basis for future research projects on the strange mechanisms of CFS/ME.”

Webarchive-link: https://web.archive.org/web/2020072...orway.org/about-us/professionals-on-recovery/
 
MSEsperanza said:
From the "Recovery Norway" website:

Rona Moss-Morris, Professor of Psychology as Applied to Medicine, Head of Health Psychology, King’s College, London, UK:

“We can learn a lot from these stories about recovery from CFS – look forward to more”.

Vegard Bruun Bratholm Wyller, Professor, Institute for Clinical medicine, University of Oslo, Norway:

“The organisation Recovery Norway gives a voice to patients who – in different ways – have completely recovered from chronic fatigue syndrome (CFS/ME). This is very important: CFS/ME is often seen as a hopeless condition, something that increases the burden on patients and their families. The fact that there is actually good hope of full recovery is therefore very important to get across to other CFS/ME sufferers, to health professionals, to health government agencies and politicians, and to the general public. In addition, the stories of the Recovery Norge members are very interesting from a scientific perspective, and can serve as a basis for future research projects on the strange mechanisms of CFS/ME.”

Webarchive-link: https://web.archive.org/web/2020072...orway.org/about-us/professionals-on-recovery/
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I would also like to point out that Wyller, in the Chronic fatigue following Ebstein Barr in Adolescents (CEBA) protocol, makes a point of having close connections with media so their results can be easily shared and spread. Or something to that effect, it could have been in the protocol sent to REK.
 
dave30th said:
I am hoping they don't have a choice about that! I hope this turns attention back to all the failures of PACE and the rest of the crap.
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I'm not optimistic. It seems that scientific reasoning, facts and evidence don't matter much when it comes to the 'successful' implementing of BPS medicine, at least in a couple of the wealthiest European countries.

See:
https://www.s4me.info/threads/cochr...ts-2020-ganslv-et-al.15975/page-2#post-275316

Also:

https://www.s4me.info/threads/how-p...fs-such-as-the-pace-trial-investigators.8066/

https://www.s4me.info/threads/government-and-insurance-companies-establishing-the-bps-model.2319/

https://www.s4me.info/threads/the-i...nuary-2018-katz-et-al.2013/page-4#post-275379

https://www.s4me.info/threads/dutch-study-on-functional-complaints-including-cfs-receives-€4-million-in-european-funding.16016/

And what @NelliePledge and you said here: https://www.s4me.info/threads/cochr...ts-2020-ganslv-et-al.15975/page-2#post-275158

Edit:
I am hopeful though with regard to particular improvements for pwME like the NICE guideline in the UK, perhaps even Cochrane, and of course the DecodeME study.

But BPS-MUSism just seems so much more convenient for some powerful institutions (in terms of money) and also for so many health care professionals (not only in terms of money but also in terms of coping with uncertainty) that it will be hard to defend those small scopes where medical soundness is given a chance now.
 
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MSEsperanza said:
From the "Recovery Norway" website:

Rona Moss-Morris, Professor of Psychology as Applied to Medicine, Head of Health Psychology, King’s College, London, UK:

“We can learn a lot from these stories about recovery from CFS – look forward to more”.

Vegard Bruun Bratholm Wyller, Professor, Institute for Clinical medicine, University of Oslo, Norway:

"The organisation Recovery Norway gives a voice to patients who – in different ways – have completely recovered from chronic fatigue syndrome (CFS/ME). This is very important: CFS/ME is often seen as a hopeless condition, something that increases the burden on patients and their families. The fact that there is actually good hope of full recovery is therefore very important to get across to other CFS/ME sufferers, to health professionals, to health government agencies and politicians, and to the general public. In addition, the stories of the Recovery Norge members are very interesting from a scientific perspective, and can serve as a basis for future research projects on the strange mechanisms of CFS/ME.”

Webarchive-link: https://web.archive.org/web/2020072...orway.org/about-us/professionals-on-recovery/
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Ha ha maybe I should write to both of them with my recovery story (largely recovered anyway - generally...)

This required correct diagnoses (multiple - from infections disease and immunology) - after misdiagnosis with ME, followed by 15 years of antimicrobial (still on-going or I get sick), anti parasitic, immune modulators, anti-viral, anti-microbial herbs etc and a long time of rest and recuperation (12 years of lack of professional salary and no progression.....) In summary - lots and lots of science and medicine :-) and the occasional counselling session so I could try and get my head around why the medical profession were behaving like such ******

All avoidable if medics had investigated the causes of patients with ME symptoms and had not systematically psychologised it over the decades.

Bizarrely, I was offered CBT/GET by an infections diseased consultant who missed multiple infectious diseases and immune deficiencies - even though he was a HIV/AIDS man. Ah well - there we go. I'm a lucky one. I've been able to access the resources to get a handle on what is going on and I've been fortunate and well enough (of a fashion) to retrain professionally and to work.
 
Amw66 said:
Of course it depends upon the definition of " recovery". In psychology and psychiatry it seems to have a different meaning which is not disseminated to the general public.
It will be interesting to watch that lexicon develop for COVID19.
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There is often a lot of confusion / conflation of the concepts of 'feeling better' and 'being better'. Two different things. One reason why objective measures are needed otherwise this can lead to misleading findings. Patients clearly want the later. Much WS BPS work has been happy to accept the former - to the detriment of patients.
 
Snow Leopard said:
I'd suggest almost all of the PVS recoveries are spontaneous in nature, based on luck/natural recovery.
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Yes - agree.

I put my PVFS recovery down to my inability to move much, luck, caution and natural recovery:

My first experience of ‘energy limiting chronic illness’ was June 2001

Described by GP on sick notes as Post Viral Fatigue (and later with added - ‘Syndrome‘).

Signed off for 8 months before a medically overseen (very slow) graduated return to work.
Never managed to achieve full time hours ever again, dropped from 37 to 22 hours pw

It was very definitely the result of a severe virus - sudden onset, very flu-like but also extreme gastric problems.

From notes I still have from the time (unfortunately I didn’t keep all of them), I did suffer with PEM, severe neck and shoulder pains, weak as a kitten, breathlessness (my oft told tale of panting as a result of just folding up a basket of tumble dried items), digestion and gastric problems, amongst other symptoms

Housebound. No driving. Parents took me to medical appts. Husband worked FT, looked after children, did shopping,cooking, cleaning, everything.

Month 6 (Nov) Appt with Consultant and I was manually checked (No scans) to discount MS, before being diagnosed with PVFS.

OK - now please don’t shoot me down, but also - I was prescribed a 10mg dose of SSRI (which I was told was ‘very small’ and did not imply that he thought I was depressed.)

Also Nov, visit from Senior Personnel Manager to home to discuss my work situation with Father (a retired Chief Admin Officer with Local Government) in attendance.

Improvements in energy Dec & Jan.

End Jan 2002, visited work & graduated return to work was agreed but I was still unable to improve as quickly as they planned and so transferred to part time working by April (?) with always Wednesdays as a non working day.

Feb 2002, met Senior Personnel Manager at work and she ‘didn’t recognise me’ as I looked so much better.

I describe myself as eventually feeling 90-95% well by 2005, and thereafter, until sudden event 2013 changed it all again.
 
Joan Crawford said:
There is often a lot of confusion / conflation of the concepts of 'feeling better' and 'being better'. Two different things.
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Just saying "I'm feeling better today" to your GP or family member is dangerous. They want you to get better, and will hang on to that everytime they see you thereafter.

Recently a couple of Canadian news outlet infectious disease doctors were suggesting that post-COVID syndrome could lead to autoimmune diseases. It's too early to know and we just don't have the data, but I'm not sensing any psychological spin in Canada so far.
 
Snow Leopard said:
I'd suggest almost all of the PVS recoveries are spontaneous in nature, based on luck/natural recovery.
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Yes. Since this is the second quote I guess I should clarify. I was thinking of people who after remaining sick for a time start using some therapy and therefore it's not clear that they would have just naturally recovered. This is why I qualified the statement the way I did but I see that I did not put that thinking down in text.

So, yes PVFS people in my view recover naturally after a prolonged recovery time that is beyond the usual week or two. But (here's what I don't know) how many start trying different treatments to aid recovery and therefore 'taint' the result? So we'd need to find those who did not do anything toward recovery other than wait.
 
Joan Crawford said:
There is often a lot of confusion / conflation of the concepts of 'feeling better' and 'being better'. Two different things.
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Absolutely. Painkillers can make you feel better. Having someone to talk to about your troubles can help you feel better. This is what the whole BPS delusion is about. Their notion of illness definitions revolves around symptoms that are all subjective, all about how people feel, it's their whole universe and can perceive nothing else. To them, if you feel better ... hey presto you are better! Because as the great MS himself proclaimed "it is how the illness is defined". No matter it was him and cronies who dreamed up their self-fulfilling definition in the first place.
 
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