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

You could mention the CureME LSHTM study: https://cureme.lshtm.ac.uk/covid-19-our-work-thus-far/

The above article also references this study at the University of Leicester: https://meassociation.org.uk/2020/0...is-warns-university-of-leicester-08-may-2020/

Other doctors/scientists who’ve written about long-covid:

Prof Debbie Bogaert: https://www.theguardian.com/comment...virus-long-haulers-infectious-disease-testing

Dr Nisreen Alwan (Associate Professor in Public Health, Southampton): https://blogs.bmj.com/bmj/2020/07/2...=hootsuite&utm_content=sme&utm_campaign=usage

Trisha Greenhalgh et al: https://www.bmj.com/content/370/bmj.m3026

Good article by Ed Young: https://www.theatlantic.com/health/...9-recognition-support-groups-symptoms/615382/

Worth reading this thread from Ed Young too:
https://twitter.com/user/status/1296450098210181126

 

I would add Ian Lipkin and Simmaron research:

https://twitter.com/user/status/1297166671929643009

 

There are many issues - not just one.

This is the main one - psychologization - https://www.me-pedia.org/wiki/psychologization

Fundamental to the origin BPS model are the following beliefs that continue to be held despite significant evidence against them and little if not any in indication that they have a basis in science
* the BPS model is a psychosocial model not a Biopsychosocial model - with only trivial biological differences, no biological treatments are to be suggested except anti-depressants
* vast amounts of money have been earned by many heavily pushing these harmful approaches, and a large amount of professional reputation depends on continuing them, it is a get-rich-quick model that any inexperienced clinician from any specialty can very easily deliver, can improvement their employment prospects and the sums earned from self-help books - many of which have been bought in huge numbers by UK libraries, royalties from chapters written in other books, delivering training to other professionals, speaking engagements, expert witness or report fees for denying patient disability claims for private health insurance, and creating their own private companies delivering the treatments - these have made millions for some people - it would cost them too much to be able to be open change. They refuse to disclose most of these are conflicts of interest and it is not possible to get an accurate total sum for individuals.
* decades of poor prognosis from patients which have not (as a group) improved do not count as evidence that their treatments don't work - the Royal Free Hospital outbreak survivors who had ME from their 20s until they died of old age despite trying CBT, GET and everything else but still has ME when they died are also not evidence that the treatments don't work and that it is a disease that is incurable and people rarely return to ill health
* insisting that illness without disease is the problem, which means that the patient is to blame (directly or indirectly) for their "symptoms" especially fatigue, pain, orthostatic intolerance, and everything that can't fit this model is kept out of the notes and out of mind or is a matter of "patient perception" not reality - ignore all immune symptoms - do not allow any medical testing after diagnosis since it may show disease, reveal misdiagnosis, or contradict the BPS model
* falsely claiming ME is not a disease and is not neurological,and is exactly the same as idiopathic chronic fatigue or fatigue from some other medical illness - burn out is also the same - and even claiming this with a World Health Organization - despite contradicting the WHO classification
* Patients who cancel or stop appointments early must have "recovered"
* Patients must be "grateful" even those significantly harmed - anything else like trying to raise the alarm so others aren't harmed should be interpreted as some "personality issue" or complicated psychological attack on the professional (because the professionals beliefs are so utterly entrenched that they can't possibly ever by wrong about the treatment)
* ME cannot kill anyone because it is "illness without disease", and never mind the deaths...
* if nobody has the answers then they (arrogantly) insist that they can treat it - patients are given the same treatment for ALL conditions - including those clearly unsuitable or that they are totally unable to do, even treatments that are likely to cause harm to better understood illnesses that the patient also have are pushed on the patient - the diagnostic process and symptom differences are considered meaningless labels which is unscientific and against scientific consensus - which they don't care
* patients who do not have any "dysfunctional" or "maladaptive" illness beliefs will improve by CBT to address these beliefs - it's not necessary to identify *if* they actually have these beliefs - make the patient do that instead - if they can't, blame them for not doing the work
* it's perfectly acceptable for psychiatrists or other professionals to hold on tightly to their own maladaptive beliefs including their black and white thinking, their belief that they do not need to look any further than first impressions to make a permanent decision, and others, reflective practice and continual improvement must be shunned!
* liasion psychiatry / MUPS psychiatrists claim to be able to treat every person for any condition - therefore they never say no - and funding floods to those who (claim to) year whatever is untreatable - which is ridiculous - nobody and no medical specialty can do that
* their treatments work therefore patients who don't get better are to blame for not correctly following them, especially those who drop out because they got sicker
* patients and their close family do not have anything useful to tell the professional and must isolate themselves from any other patients or support groups in order to increase dependence on the professional, but in reality because that makes them easier to manipulate, and less likely to be able to question the professional's treatment or views
* keep repeating to yourself and others that CBT and GET work and write it on every research paper, and don't listen to anyone who points out evidence against them - Orwellian style creation of "the truth" though authority figures - the original PACE study before the data release showed *most people* were not helped by CBT or GET - but they pretended it was evidence that showed the opposite (the PACE data release proved no statistical improvement)
* entirely false understanding of their own abilities, which is maintained by persistently ignoring or discrediting all specialists whose findings they don't agree with
* medically unexplained physically symptoms are never or almost never - the result of unknown diseases or misdiagnosis or rare diseases - therefore do not ever consider these
* medically unexplained physical symptoms cannot possibly be the result of a physical illness that science does not understand or that science has not identified yet - "science knows everything"
* physical diseases will improve in virtually every person who is given mental health input whether they need it or not
* it's perfectly acceptable to trick patients into thinking that you believe they are reporting reality, and somehow this is not an ethical issue or manipulative
* there must never, ever be any treatment studies looking at treatment failures of the psych approach - any other kind of psych specialism will do these studies and seek to understand more so different treatments can be developed but the BPS model is too fragile to handle this
* researchers who have withheld data, indulged in outcome swapping, made nasty personal attacks on individual patients (like that aimed at Alem Matthes when he was severely ill) and mass character assassination in mainstream media (eg Wessely), persistently and knowingly made false ethical statements in their research (Crawley) should still be listened to and their opinions should be respected and viewed as objective
* Writing a book about a self -help approach to healing for an incurable disease is not unethical, and is not a conflict of interest no matter how much it makes

 

yes, Chalder has earned a fortune from people with ME and is a PACE study author and denialist... Malcolm Hooper's The Mental Health Movement: Persecution of Patients goes into their thinking and flawed behaviors.

I felt similarly about reading CFS: The Facts by Michael Sharpe (PACE author), and Frankie Campling (patient - who I later found out never recovered despite endorsing the CBT crap).

 

@daftasabrush

I think I get your point (it was too long for me to be able to take in) but my point was from the patients POV I think you r points were all from the therapists perspective.

 

Some good studies here plus a few early surveys of patients, to add to those from @rvallee

https://www.c19recoveryawareness.com/research

Also check the Post-COVID-19 illness page on MEpedia (studies list and news articles).

Lung damage, brain issues like encephalitis, and in rare occasions psychosis have come up. Those hospitalized or on ventilators will have known complications from the invasive treatment rather than necessarily from the illness itself.

The International Consensus Criteria Primer includes DeBecker's huge study ranking symptoms by how many people had each symptom. The Canadian Consensus Criteria appendix has a page listing about 80 symptoms which should also help find ME symptoms that are uncommon in post-COVID-19 illness / ME caused by COVID-19.

Whatever you write might end up being used as a tick list for "do I have ME" so worth bearing in mind that including ME or CFS criteria somewhere and a disclaimer would be useful - I can see some with ME thinking they may not have it if it's not clear to them which of the ME symptoms are required and which are common but optional, or those with ME after COVID-19 assuming that they don't have ME (ie that you can't have both).

 

Big thanks to @Andy for posting this. I posted similar on Twitter and got very lucky

https://twitter.com/user/status/1297138221420249089


It's amazing and, hopefully, this will lead to serious action by the WHO.

Moderator note: This post has been copied and following posts discussing the WHO and ME will be moved to this new thread:
The World Health Organisation and ME - social media interaction, August 2020.

 

https://www.irishtimes.com/news/hea...s-worse-than-the-initial-experience-1.4335815
https://twitter.com/user/status/1297277233812430849

https://twitter.com/user/status/1297277925893582848

https://twitter.com/user/status/1297278485745094657

 

This article which is beside it in the print edition briefly mentions
other post viral complications
“It is anticipated that patients will experience some degree of
persistent respiratory symptoms or disease, reflecting the pattern of
disease progression seen in the 2002-2004 SARS outbreak.”
<https://www.irishtimes.com/news/hea...umonia-patients-need-follow-up-care-1.4335823>
https://twitter.com/user/status/1297283322754863106

 

Ed Y’s article is overall good and his tweets about ME encouraging.

However, may I ask if anyone has thoughts on this bit in the article:

“The trick, then, is to slowly recondition a patient’s nervous system through careful exercises, without triggering a debilitating crash. On Putrino’s team, a strength and conditioning coach devises workouts to slowly get patients accustomed to a higher heart rate.”?

Knowing it is still early days and we still need to learn more whether there is - and if so to what extent - overlap between ME and longhaul CoVid, I wonder what evidence he is basing the claim that a patient’s nervous system can be retrained? We know it can’t be for ME.

Also I notice a longCovid group are running with a ‘research, rehab and recognition’ slogan. Should longhaul CoVid turn out to also include a broken energy system as in ME is rehab a word/notion that could backfire?

 

Many teams are working with exercise rehabilitation. Unfortunately they do not seem to understand the issue here. I saw from one article that Putrino seems to view long Covid as some post-viral dysautonomia as the better explanation.

Very misguided but this is what will put the whole deconditioning and exercise is good thing to rest. Too many people working their own small subset of reality, unaware of the broader set of realities out there. All those studies that would have been clearly unethical to do are happening right now, with the expectation that exercise should build tolerance in magical ways, like building tolerance against an allergic substance, which is obviously not how any of this works. That framing was always so damn weird.

Those are simply the words of some of the experts involved. Yong was fair in how this was presented, there is just so much background to this that it's hard to keep track. He did mention how exertion is a massive problem and here you have this team dedicated to trying to exercise people out of it, which will fail massively.

A lot of people will be hurt by this but if there's one thing that is inevitable is that people will commit maximally to making the worst possible mistakes to their fullest extent. But this time things will be recorded and although some may balk at the reality of their expectations being proven false and may be be tempted to falsify, not everyone will and there will be plenty of patient feedback this time.

BPS experiments always abused the way medical trials confer anonymity so that participants would not be tracked down and not speak out. Not this time, this is way more open and the long COVID community is talking with each other.

This could have been avoided entirely but instead all the mistakes have to be repeated many times before people finally learn the lessons. Not much we can do other than warn that this is a mistake and to explain once the mistake is realized that they need to pay attention to the patients.

 

Thanks rvallee for your reply. Which teams are you referring to when you say ‘many teams are working with exercise rehab programs’?

I am concerned that the longCovid group using the slogan ‘Research, Rehab and Recognition’ don’t realise the danger of what type of rehab they will be given if a broken energy system turns out to be part of longCovid. I hope you are right that this time it will become clear sooner than later to the medical teams involved the dangers of exercise rehab for post viral illnesses and patient feedback of harm will be taken seriously. I did exchange a few short tweets with a longcovid group called Long CoVid Support Group on twitter about the rehab part of their Research, Rehab, Recognition slogan. Their answer was ‘the rehab sought by @long_covid informed by @UKSepsisTrust & other medical experts, must specifically take account of #PEM many #LongCovid sufferers are diagnosed as unfit to exercise. We’ve learned a lot from the #MECFS community. Follow us on Twitter. We are allies in this”. I personally don’t have much faith organisations such as UKSepsis trust will be knowledgable of how to manage the PEM feature if it is part of longhaul CoVid. I fear if they use standard rehab it could cause more harm than benefit. We shall see.

I suggested to the longCovid person to check out the MEdialogues videos on PEM if they hadn’t already which they said they would.

I thought Ed Y was fair and overall wrote a good article. I felt he had a good grasp of how let down pwme feel as well as some longhaulers concerns about linking longCovid with ME and understandable fears that some may have developed a chronic condition. Know still early days. As he did not write the bit about retraining the nervous system in speech marks I couldn’t work out whether he was directly quoting one of the med professionals he interviewed working with longcovid patients or that was his understanding of the underpinnings of their approach from what they shared. It sounded hogwash to me.

 

Really good article here, points out that some "long covid" symptoms began with the infection, others developed later.

https://blogs.bmj.com/bmj/2020/07/1...longcovid-are-missing-from-the-nhs-narrative/

One author - Sharon Taylor - is a liaison psychiatrist - the "medically unexplained physical symptoms" specialism that had done immense damage to many many patients - more so than any other medical specialty.

I am also concerned about the "rehabilitation" and "recovery" narrative - it's the false impression that such a thing has evidence, and that there can be no lasting damage. We don't know that yet! It should be management and treatment. The notion of rehabilitation is the "act of restoring someone to normal life "/ previous health - it is never, ever, used in degenerative illness nor in serious illness - rehabilitation is where you go when discharged from hospital or when improvements are known to be possible.

I see the hostile DWP-style false narrative in this - the coercing of the sick and the withdrawal or support for those unable to or unwilling to comply - under the false notion of "helping the disabled". Informed consent does not allow coercion or withdrawal of care - and states risks must be clearly explained and patients must be given choices. It feels like a repeat of the treatment of ME patients - announce a well funded but inappropriate project, shut patients views out, give false home and claim to have answers that do not exist, with patient blaming sure to follow.

By putting this under a rehab banner, occupational therapy and physio is likely to have major input but not neurology, immunology, kidney specialists that are certainly needed for COVID-19, and I bet that POTS specialists are entirely shut out by the false claims of "anxiety" in everyone with Tachycardia, POTS or dysautonomia symptoms.

I regularly try to avoid reading on long covid since it's so horrible to think of what they are going through, and what they are likely to face in terms of medical help. It's not good to be in that headspace.

 

Thank you @daftasabrush for your comments. I agree the whole notion of rehab in the context of longCovid is problematic as you rightly say it indicates that the issue is temporary when that is not known yet. My concern is that the Longhaul Support Group made up of people with longhaul CoVid have put their support behind rehab by having it in their slogan.

 

Coronavirus symptoms update: The two main symptoms which persist even after recovery

https://www.express.co.uk/life-styl...-fogginess-myalgic-encephalomyelitis-covid-19

wish someone would let the author know that one of the problems in getting ME researched seriously is due to inaccurate conflation of ME with 'chronic fatigue' as in their article.

eta:
and another one does the same
https://pressfrom.info/us/lifestyle...drome-and-long-term-coronavirus-symptoms.html

 

Source: Yahoo
Date: August 22, 2020
Author: Samantha Brodsky
URL: https://sports.yahoo.com/had-covid-19-feeling-lingering-112242417.html


If you had COVID-19 and are feeling lingering effects of Chronic
Fatigue, you're not alone
-------------------------------

 

From the article above. Again with this David Putrino, a physical therapist with a PhD in neuroscience, director of rehabilitation innovation in the Mount Sinai Health System advising exercise when he doesn't understand that long-haulers COVID patients could possibly develop ME. The article does not explain that pwME can have both dysautonomia and ME.

 

Video on DailyMotion 24h news.
Mentions Covid-19 and ME/CFS
If you can stand the auto generated speech, "it affects 2.5 metre Americans"

 

https://twitter.com/user/status/1297515977198972929

https://twitter.com/user/status/1297516682487963648

https://twitter.com/user/status/1297517572095643648

https://twitter.com/user/status/1297518281188937728

https://twitter.com/user/status/1297518790759133185

https://twitter.com/tomkindlon/status/1297519574561193985?s=21

https://twitter.com/tomkindlon/status/1297520506619547649?s=21
https://twitter.com/tomkindlon/status/1297521361032744961?s=21 https://twitter.com/tomkindlon/status/1297522184290795527?s=21

 

Most of the clinical research teams seem to be doing this. Haven't kept notes but from articles talking about those rehabilitation efforts most of them state using exercise rehabilitation based on the assumption of deconditioning.

So at least there's the test of this paradigm that would have been too unethical to do without this context. Sadly those harmed by this will also be dropped dead by medical services but we can't do anything more than warn people that it will happen and that they are making a mistake.