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

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rvalee said:
It resembles the mildest cases of CFS and is probably that, the mildest end of the spectrum where the virus did not find its way into the nervous system. Whether it's the same thing or not would be pretty useful information but, you know, "business of rehabilitation" and all. Hence the major issue with keeping an entire spectrum that goes from "temporarily mildly limiting" to "slow and unbearable death" as being the same thing.
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I was mildly affected for the first 4.5 years e.g. full-time education at a high level. Exercised to some extent for most of that including cycling 6 miles/10km or swimming 1000 metres virtually every second day for over a year. Ended up borderline very severe for a period and now long-term severe so think the illness can have a wide spectrum.
 
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chrisb said:
That was not what Ramsay had in mind. He was thinking of something very similar to ME but without the variability of symptoms. I copied the quote to a thread the other day-but I have no idea which one.
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I think this might be it @chrisb
chrisb said:
The second component of my case is the clinical picture of ME. The onset of the disease may take various forms involving the respiratory or gastrointestinal tracts. More rarely but very dramatically it may commence with an acute attack of vertigo accompanied by rapid heart action. The onset of the disease may be sudden or gradual. This is of no importance since the end product is the same. Muscle pain and tenderness are practically always present and after even a minor degree of physical effort there is delay of 3,4 or 5 days or longer in the restoration of muscle power. But the crucial differentiation between ME and other forms of post viral fatigue syndrome lies in the striking variability of the symptoms not only in the course of a day but often within an hour. This variability of the intensity of symptoms is not found in post viral fatigue states. I had extensive experience of PVFS during my many years as a Consultant in infectious diseased at the Royal Free Hospital. We saw and admitted all cases of acute infectious disease amongst the students. It was a frequent occurrence to find students who had influenza or glandular fever still unwell even 8 months later, complaining of muscle fatigue and tenderness coupled with inability to understand a passage in a text-book. In this condition there was no variability in the intensity of the fatigue which remained constant. The most severe of these post viral fatigue states recovered completely within 2 to 2 1/2 years and did not recur. Within the term "chronic fatigue syndrome" all these cases are lumped together and no differentiation of true ME is made.
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From Cort Johnson:
“Long Haulers” to the Rescue? Barrage of Covid-19 Media Stories, Studies and Registries Spell Hope for ME/CFS

In the last 5 weeks over 50 media stories have focused on the thousands of "long haulers" - people having trouble recovering from COVID-19.

These potential ME/CFS patients are having an impact that is showing up in increased attention to ME/CFS, in large studies that are digging deep into their physiology as they fail to recover, and in COVID-19 registries that could turn out to be fundraising gold for us.

Early results suggest researchers may indeed be uncovering a very ME/CFS-like condition. Find out more in the first part of a two part series of how the coronavirus pandemic is transforming how ME/CFS is viewed and hopefully studied in:

“Long Haulers” to the Rescue? Barrage of Covid-19 Media Stories, Studies and Registries Spell Hope for ME/CFS
<https://www.healthrising.org/blog/2020/07/05/long-haulers-media-covid-19-chronic-fatigue-syndrome/>
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chrisb said:
It does seem odd that as an infectious diseases expert he had so little knowledge of ME/CFS/PVF/PVFS.
One would expect him to be starting from a much higher level of awareness. Perhaps this explains the problem we have.
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ME as found in the epidemics was thought to be enteroviral which was a dangerous idea as polio was considered defeated when the vaccine was brought in. I have come to believe that this association is the reason everyone was so keen to believe it was mass hysteria at the Royal Free.

All expertise in enteroviruses has been lost over the years and the are considered a problem of the past, just trivial diseases of children nowadays. That will be why Garner doesn't know much about the epidemics and ME. CFS has always been the domain of the psychs so why would an infectious disease person be interested in a behavioural disease.

Dolphin said:
I was mildly affected for the first 4.5 years e.g. full-time education at a high level. Exercised to some extent for most of that including cycling 6 miles/10km or swimming 1000 metres virtually every second day for over a year. Ended up borderline very severe for a period and now long-term severe so think the illness can have a wide spectrum.
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Me too. I had problems with PE because of the repetitions but I could walk for hours. Not much fatigue though I wondered why everyone found things easier than me, but I would have embarrassing episodes of double vision, paralysis and speech problems. I also had absence seizures (FND! FND!) and lots of pain. My contact with doctors was because of the pain and urinary retention which is included as a symptom of the epidemics and I have only found elsewhere in MS.
 
I wrote to my MP re GET and implications for COVID 19 cohort as part of MEAction's campaign - my MP has had a response from the Minister for Public Health, Sport and Wellbeing - I have copied below, with my full name redacted and split into shorter paragraphs for ease of reading.
GET being little more than a placebo is really not understood ( at a seminar run by Afme at least a couple of years ago a Lothian clinic at the table kept reinforcing that GET was helpful for some - this really needs to be addressed)

@PhysiosforME it may be worthwhile feeding into the current Scottish review re GET - please note that you need to be quite succinct and use short sentences and no parenthesis, as one member managed to misconstrue @Jonathan Edwards carefully written statement in support of a recent parliamentary petition by Emma Shorter and ME Action!

The Scottish Good Practice Statement referred to can be found here
https://www.scot.nhs.uk/wp-content/uploads/2015/06/GoodPracticeStatement.pdf



T : 0131-244 4000

E : scottish.ministers@gov.scot


John Scott MSP

John.Scott.msp@parliament.scot

Our Reference: 202000035866

Your Reference: Covid 19 patients

03 July 2020


Dear John,


Thank you for your email of 8 May 2020 regarding concerns raised by your constituent, ????????,about the prescription of Graded Exercise Therapy (GET) as a treatment for Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS).


It may be helpful if I start by providing an update on developments since our previous correspondence.

The Cabinet Secretary and Dr Calderwood appeared before the Public Petitions Committee again last December and also subsequently both replied in writing earlier this year. This reflects our current position on GET and confirms we will review the advice on GET in Scotland when the findings of the NICE research has concluded and the updated NICE guideline on ME/ CFS is published.


This was due to be in 2020, however, the COVID-19 pandemic may delay the final version until 2021. Further to the information I provide previously, we continue to work closely with #MEAction and other ME/CFS organisations to consider the latest evidence and guidance, to inform what action we take in Scotland.


In responding to ??????, you may wish to highlight that the current information about ME/CFS available to patients and healthcare professionals, through the Scottish Good Practice Statement

(SGPS) on ME/CFS, explains that GET will not be suitable for everyone with ME/ CFS and that its prescription is seen as controversial. This reflects that studies report some people consider it beneficial, whereas others find it detrimental. The SGPS notes the risks of treatment must always be explained and discussed before individuals decide to proceed and it should be delivered by a suitably trained GET therapist with experience in ME/ CFS.


You ask about post-viral fatigue and COVID-19. As you may be aware, some degree of post-viral fatigue is fairly common after a viral infection, however, we need to understand more about COVID-19. In particular to better know how to prevent infection, how to treat people that contract it and also how to support people afterwards during rehabilitation and the longer term affects.

We are working with partners across the UK, on world-class COVID-19 research, which is a key element of the Government's overall response to the pandemic; Scotland forms part of a single national UK process led by the National Institute for Health Research and draws on expert advice to prioritise time critical COVID-19 studies, which hold the most potential for tackling the challenges faced (https://www.nihr.ac.uk/covid-studies/).

In addition, the Chief Scientist Office is funding 55 rapid research projects to better understand the effects of infection in order to inform and improve treatment and consequences of the virus. Further information is available at

https://www.cso.scot.nhs.uk/rarc19projects/


You may also like to bring to ??????’s attention that the Scottish Health Council (SHC) has undertaken a gathering views exercise for us to find out what people with ME/CFS think good care looks like. We expect SHC to shortly publish a report setting out the findings from over 450 people that responded.

Public Health Scotland has also commenced work on a needs assessment about existing practices and provision for ME/CFS.


These projects, coupled with the NICE updated guideline, form part of our review of care and support for ME/CFS in Scotland

It may also helpful to mention the Scottish Government is also working with Action for ME to fund research into the biomedical understanding of ME/CFS through the University of Edinburgh and the creation of a Priority Setting Partnership at the James Lind Alliance to agree the top 10 priorities for future research on ME/CFS.


Lastly, we recognise ME/CFS is a distressing and debilitating condition and to raise awareness we contributed to the Millions Missing Campaign by illuminating Scottish Government buildings blue on the 12th of May. Photographs were shared on social media, however, I attached a couple to share with your constituent, ??????.

I hope you have found the information in this letter helpful.

Yours sincerely

Joe FitzPatrick
 
mango said:
Here's a Swedish news article (behind paywall) suggesting long-term covid-19 symptoms might be anxiety.

DN: "Långvariga covid-19-symtom kan vara ångestsyndrom – men det finns andra orsaker"
https://www.dn.se/nyheter/sverige/l...-kan-vara-angestsyndrom-men-inget-vet-sakert/

Summary of the article by another news website:
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Another news website summarises the news article in DN:

Aftonbladet: Coronasymtom kan vara något annat än covid-19
Google Translate said:
Corona symptoms can be something other than covid-19

Have you felt corona sick with fatigue and sweating for longer than two weeks?

Maybe it's not covid-19 you have after all - but can be something else. One examines, for example, whether it can be anxiety.
If you get mild corona symptoms, they usually disappear after 14 days.

But there are people who feel sick much longer than that.

Researchers are currently trying to find out the cause. For example, it could be due to underlying diseases that have come to the surface due to covid-19, or that the immune system is reacting undesirably by initiating inflammation in the body. Or there may be a psychological explanation, writes Dagens Nyheter.

Diffuse headaches, numbness, prolonged fatigue, stomach problems and pain moving around between different body parts are some of the symptoms mentioned in groups on social media where members feel they have survived corona.

Also pains in the body, palpitations and sweating.

- These are symptoms that are also described in anxiety disorders. But if they can also occur as a result of covid-19 disease, we do not know for sure today, says Hans-Gustaf Ljunggren, professor of infectious medicine at the Karolinska Institute in Solna, to the DN.

He also emphasizes that it is important to take those who experience the problems seriously - considering how little you still know about the new corona virus.
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I also read in a Swedish newspaper a couple of days ago (Aftonbladet?), about some sort of closed forum for physicians (Facebook-group?) where they were joking quite explicit about the fact, that it is not long before the first patient complaining and insisting on long term illness/symptoms after covid-19.

History and facts indicate that it is not a joke and worth studying, not joking (that much) about, although such forums obviously must be a place where physicians also should be allowed to joke and whatever. When confronted, they sort of explain it afterwards like an expression, a kind of ventilation, due to their own uncertainty, the lack of understanding and probably also the lack of offering help. Ok, that should be a good starting point for curiosity and efforts to gain more knowledge and ultimately maybe some help, at least some good advice, not the usual and easy blaming patients again.
 
Peter said:
I also read in a Swedish newspaper a couple of days ago (Aftonbladet?), about some sort of closed forum for physicians (Facebook-group?) where they were joking quite explicit about the fact, that it is not long before the first patient complaining and insisting on long term illness/symptoms after covid-19.

History and facts indicate that it is not a joke and worth studying, not joking (that much) about, although such forums obviously must be a place where physicians also should be allowed to joke and whatever. When confronted, they sort of explain it afterwards like an expression, a kind of ventilation, due to their own uncertainty, the lack of understanding and probably also the lack of offering help. Ok, that should be a good starting point for curiosity and efforts to gain more knowledge and ultimately maybe some help, at least some good advice, not the usual and easy blaming patients again.
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Maybe this one?
mango said:
This was also in Expressen the other day (ME is mentioned briefly):

Läkare kritiseras för inlägg om långtidssjuka: ”Galghumor för att orka med”
https://www.aftonbladet.se/nyheter/...nlagg-om-langtidssjuka-galghumor-for-att-orka

Google Translate: 'Doctors criticized for posts about long-term illness: "Gallows humor in order to cope"'
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Summary
In this blog, intensive care doctor Jake Suett draws on his personal journey and that of others to highlight the prolonged and frightening symptoms many patients with confirmed or suspected COVID-19 are experiencing. Jake outlines his concerns and sets out recommendations for future action to address the needs of these 'Long COVID' patients.

Included is an example letter that can be adapted by others to call on MPs to raise awareness of those suffering persisting symptoms of COVID-19.
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https://www.pslhub.org/learn/corona...s/my-experience-of-suspected-long-covid-r2547
 
That looks like a thoughtful article and a very good letter for long Covid sufferers to sent to MP's asking for proper research and access to medical care. Interesting that he makes no assumptions about the 'fatigue' experienced. I think that's actually a good thing at this stage. Nobody knows whether some are developing ME or not, and assumptions that all post covid symptoms can be attributed to PVFS or ME are unwarranted. Doing so may lead to people with acute blood clot related organ damage being missed.
 
Wits_End said:
Scientists investigate cases of post-Covid-19 fatigue

http://www.msn.com/en-gb/health/med...post-covid-19-fatigue/ar-BB16mxBk?ocid=ASUDHP
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Brightling’s study will track around 10,000 patients who were admitted to hospital with Covid-19. This will allow scientists to assess what proportion of patients end up with which long-term health impacts, and what the risk factors are for different symptoms.
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So this isn't really looking at the long-haulers, as it's only tracking patients who were admitted to hospital. From what I can make out most of the long-haulers weren't badly affected enough to be admitted to hospital, but stayed at home. So I don't think we're going to find the risk factor for different symptoms if we're only looking at hospital patients. Yet more carp research that won't really be particularly useful.
 
Fatigue, shortness of breath, anxiety: What we now know about the longer-term effects of Covid-19
Some patients who recovered at home have reported fatigue and other symptoms weeks after their diagnosis.
16 hours ago 81,746 Views 49 Comments
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https://www.thejournal.ie/covid-recovery-5138543-Jul2020

No mention that I recall of "post viral fatigue"/"post viral syndrome"/"post viral fatigue syndrome" or something similar.
 
It always seemed to be a failing of reporting that in the cases of long term sequelae after the epidemics we never knew if their was any correlation between severity of initial symptoms and severity of long term chronic symptoms. Were those initially most severely affected at the RFH the ones reported having severe symptoms in 1987. It would have been difficult to research but it would have been helpful to know.
 
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