News about Long Covid including its relationship to ME/CFS 2020 to 2021

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I don't know who to tell this to but this needs all alarms blaring red, fast and LOUD. People will get hurt by this. People will likely die by this. It's an absolute disaster.

Maybe I read it wrong. But it looks like the worst possible thing anyone could have come up with.
 
Continuing with the RCGP document:
Exercise that uses muscles and increases demand upon the cardio-respiratory system will be important. It benefits not simply general fitness, but also a range of other problems such as fatigue, emotional disturbance, lack of confidence, and performance of effortful activities such as walking, if these were limited. It is a core component of all cardiac and pulmonary rehabilitation and should be encouraged from the outset.
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Specific practice at activities that are limited in some way is the key step to improvement in those activities. In rehabilitation, as in all other aspects of life, the maxim ‘practice makes perfect’ holds true, even if perfection is not achieved. In rehabilitation jargon, it is referred to as ‘task-specific training’. The principle applies in all conditions. It will be particularly relevant to COVID-19 patients with neurological and musculoskeletal damage.
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Psycho-social support is the third intervention identified in almost all studies showing rehabilitation to be effective. It is not well-defined, but refers most commonly to management of emotional disturbance, changes in self-esteem and self-confidence, and similar constructs. It involves techniques such as cognitive behavioural therapy and motivational interviewing. Re-establishing social contacts and social networks is also included within this portmanteau word, often involving the arrangement or provision of social support through day centres, social prescribing etc.
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The fourth major pillar of all rehabilitation is education. This COVID-19 rapid report © Royal College of Physicians 2020. All rights reserved. 4 covers many specific areas: patient self-management; carers (family and professional) being taught how to support self-management; carers being taught to facilitate practice, and/or to provide care safely; carers being encouraged to facilitate social integration; teaching patients, and others as appropriate, about the disease and its management; and setting expectations for all parties. For patients after COVID-19, advising on the prognosis and setting expectations will be difficult, and clinicians will have to admit a degree of uncertainty. Therefore, teaching patients and families how to manage this uncertainty will be a particularly important aspect of rehabilitation after COVID-19
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Psychosocial medicine is on the way:
The reasons change is needed, and many of the changes required, have been set out elsewhere.18 The main changes needed are:
> rationalisation and reorganisation of the myriad of services for people with continuing disability into a coherent, comprehensive rehabilitation service
> ensuring that every patient with persistent disability is seen by the rehabilitation service from the outset, preferably from first contact with healthcare
> providing the service in all settings from intensive care through hospitals and care homes into the wider community, in parallel with medical services
> providing rehabilitation across all ages and conditions
> ensuring full integration between mental health services and rehabilitation services
> a parallel reconstruction of commissioning, reducing the emphasis on ‘specialist rehabilitation’ by recognising that all rehabilitation requires expert knowledge and skills.
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rvallee said:
I don't know who to tell this to but this needs all alarms blaring red, fast and LOUD. People will get hurt by this. People will likely die by this. It's an absolute disaster.

Maybe I read it wrong. But it looks like the worst possible thing anyone could have come up with.
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Perhaps someone can tweet this to Dr. Paul Garner? I'm sure he'd love to have the RCP tell him to exercise right now. ;)
Seriously, though, he sounds like he might be a good ally on this.
 
rvallee said:
"Rehabilitation" advice coming from the RCGP is just as dreaded as anticipated, literally the BPS/PACE/MUS model:

https://www.rcpjournals.org/content/clinmedicine/early/2020/06/08/clinmed.2020-0353
https://www.rcpjournals.org/content/clinmedicine/early/2020/06/08/clinmed.2020-0353.full.pdf


Likely the IAPT psychometric questionnaire combo. Utterly useless and irrelevant to the illness itself. Though plenty are already desperate, so obviously the biased questionnaires will "reveal" a lot of "anxiety".

This will cause most post-viral illness patients to deteriorate significantly and likely cause suicides by way of medical gaslighting. Absolute disaster. The cited evidence seems very fragmented and arbitrary. I will eat my hat if this doesn't have Gerada and Wessely's hands on it. I do not own a hat so it's a safe bet but whatever.
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@PhysiosforME , another one for you folks to look at.
 
rvallee said:
"Rehabilitation" advice coming from the RCGP is just as dreaded as anticipated, literally the BPS/PACE/MUS model:

https://www.rcpjournals.org/content/clinmedicine/early/2020/06/08/clinmed.2020-0353
https://www.rcpjournals.org/content/clinmedicine/early/2020/06/08/clinmed.2020-0353.full.pdf


Likely the IAPT psychometric questionnaire combo. Utterly useless and irrelevant to the illness itself. Though plenty are already desperate, so obviously the biased questionnaires will "reveal" a lot of "anxiety".

This will cause most post-viral illness patients to deteriorate significantly and likely cause suicides by way of medical gaslighting. Absolute disaster. The cited evidence seems very fragmented and arbitrary. I will eat my hat if this doesn't have Gerada and Wessely's hands on it. I do not own a hat so it's a safe bet but whatever.
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The author, Derick T Wade, is a consultant in neurological rehabilitation at Oxford University Hospitals and visiting professor at Oxford Brookes.

He’s written books on stroke recovery, MS service provision/ managing chronic disability, measurement in neurological rehabilitation, and rehab of cognitive deficits.

He’s on Twitter, his bio says he’s interested in “questioning the evidence, especially behind orthodox beliefs”...

 
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hinterland said:
The author, Derick T Wade, is a consultant in neurological rehabilitation at the Oxford University Hospitals and visiting professor at Oxford Brookes.

He’s written books on stroke recovery, MS service provision/ managing chronic disability, measurement in neurological rehabilitation, and rehab of cognitive deficits.

He’s on Twitter. His bio says he’s interested in “questioning the evidence, especially behind orthodox beliefs”...

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I see Millions Missing France are on the case again.

 
From: Brimmer, Dana (CDC/DDID/NCEZID/DHCPP) (CTR)
Sent: Friday 12 June 2020 04:47
To: MECFS-SEC (CDC) <mecfssec@cdc.gov>
Subject: COVID-19 Broad Agency Announcement


Apologies for duplicate cross postings.


CDC just published a COVID-19 Broad Agency Announcement, which is available at the following link:

https://beta.sam.gov/opp/a7c371ca8f4e4b138f3d0a5005d6b145/view?keywords=75D301-20-R-68024&sort=-relevance&index=&is_active=true&page=1.


Although this announcement is not published by the ME/CFS program, we would like to bring it to the attention of the SEC Call List participants who have an interest in postinfectious fatigue, ME/CFS/or similar syndromes, and other outcomes affecting neurocognitive functioning and health.
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hinterland said:
The author, Derick T Wade, is a consultant in neurological rehabilitation at Oxford University Hospitals and visiting professor at Oxford Brookes.

He’s written books on stroke recovery, MS service provision/ managing chronic disability, measurement in neurological rehabilitation, and rehab of cognitive deficits.

He’s on Twitter, his bio says he’s interested in “questioning the evidence, especially behind orthodox beliefs”...

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This is what he says on PACE:

Dr Derick Wade, Consultant and Professor in Neurological Rehabilitation and Clinical Director, Enablement Directorate, Oxford Centre for Enablement, said:

“CFS is common, and it is vital to know whether treatments proposed and/or used are safe and are effective. Randomised controlled trials provide the best and only reliable evidence on safety and effectiveness of any intervention in any condition. The trial design in this study was very good, and means that the conclusions drawn can be drawn with confidence.

“This is a very significant finding. It identifies that one commonly used intervention is not effective (and therefore should not be used), and it confirms the effectiveness of two treatments, and their safety. The study suggests that everyone with the condition should be offered the treatment, and every patient who wishes to be helped should be willing to try one or both of the treatments. It also means that we can allocate resources to treatments that will benefit patients and, more importantly, stop allocating treatments that do not have proven efficiency. Further research should identify ways that treatments derived from these may deliver greater benefits.

“Research needs to investigate both treatments and factors that increase the risk of developing CFS. However, it is probably more effective to research treatments, and proving a treatment is effective starts to give clues about causative factors.”
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"The study suggests that everyone with the condition should be offered the treatment, and every patient who wishes to be helped should be willing to try one or both of the treatments. It also means that we can allocate resources to treatments that will benefit patients and, more importantly, stop allocating treatments that do not have proven efficiency. Further research should identify ways that treatments derived from these may deliver greater benefits."

Why would the study suggest the bit in bold? No need to say more I guess.
 
Jonathan Edwards said:
"The study suggests that everyone with the condition should be offered the treatment, and every patient who wishes to be helped should be willing to try one or both of the treatments. It also means that we can allocate resources to treatments that will benefit patients and, more importantly, stop allocating treatments that do not have proven efficiency. Further research should identify ways that treatments derived from these may deliver greater benefits."
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This is one of the quotes that upset me the most at the time of PACE publication, because it implies, strongly, that anyone who does not want to try these "treatments" must therefore not want to be helped. ie if you don't want to do CBT/GET you want to stay ill. It's disgusting.
 
“Research needs to investigate both treatments and factors that increase the risk of developing CFS. However, it is probably more effective to research treatments, and proving a treatment is effective starts to give clues about causative factors.”
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I agree with him that an effective treatment can give us clues about causative factors. An ineffective treatment also does. The PACE trial therefore tells us that recovery from ME/CFS does not depend on the targets of CBT and GET, illness beliefs and avoidance of exercise.
 
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strategist said:
I agree with him that an effective treatment can give us clues about causative factors. An ineffective treatment also does. The PACE trial therefore tells us that recovery from ME/CFS does not depend on the targets of CBT and GET, illness beliefs and avoidance of exercise.
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That's one of the most frustrating things. If it "works" it proves the assumptions. If it doesn't work it doesn't disprove them. That's not a serious process. If one commits to a large trial they have to accept the conditions they set and if they set out to prove an assumption it goes both ways when it fails.

Otherwise it's basically like gambling but you only keep the wins, never have to pay the losses. With actual human lives. Millions of them. That kind of deal doesn't exist anywhere else in society, at least the respectable parts of society. It's completely corrupt.
 
rvallee said:
That's one of the most frustrating things. If it "works" it proves the assumptions. If it doesn't work it doesn't disprove them. That's not a serious process. If one commits to a large trial they have to accept the conditions they set and if they set out to prove an assumption it goes both ways when it fails.

Otherwise it's basically like gambling but you only keep the wins, never have to pay the losses. With actual human lives. Millions of them. That kind of deal doesn't exist anywhere else in society, at least the respectable parts of society. It's completely corrupt.
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Like witch trials. If you sink, you're not a witch, but you're dead.
 
Randomised controlled trials provide the best and only reliable evidence on safety and effectiveness of any intervention in any condition.

PACE was not controlled. Nowhere in the PACE paper does it say it is controlled. There is no possible dispute about that.

If he can't even get a basic fact like that correct, why should anybody pay any attention to the rest of his assertions?
 
Weak coverage in the Canadian press. No research done.

'Great medical mystery' as COVID-19 'long-haulers' complain of months-long symptoms

https://www.ctvnews.ca/health/great...rs-complain-of-months-long-symptoms-1.4981669
Because the topic of the pandemic has become unavoidable, Gorfinkel said that some individuals may be experiencing physical symptoms stemming from psychological issues.

“Previous influenza epidemics have been associated with an increase in anxiety, insomnia, fatigue and depression,” she said.

What’s more, Gorfinkel said people who did contract COVID-19 may have lingering physical symptoms that are the result of the psychological trauma they have experienced during the crisis.
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It's not all bad, they do highlight the need for research, but this is just weak sauce.

@ScottTriGuy, how do we work with the ICanCME thing? Is it set up? No visible communication yet. Starting to take a long while, frankly. Now that we have people high up, might as well flex that bureaucratic muscle. It would work better if it came from government.
 
rvallee said:
@ScottTriGuy, how do we work with the ICanCME thing?
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We applied for some of the recent Covid research funding -- the executive committee is meeting in about a week so the potential Covid - ME connection should be an agenda item (if I get my way).

In Ontario, MMC is part of a small team connected to one of the emergency preparedness physicians, and we're connecting the Covid-ME dots for him.

I'm not impressed with Dr Gorfinkel's reference to psychological causes. Her twitter: https://twitter.com/DrGorfinkel

I wonder what her still sick with Covid sister, also a doctor, thinks of that?
 
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