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

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.

 

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.

 

I think this might be it @chrisb

 

From Cort Johnson:

 

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.

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.

 

Scientists investigate cases of post-Covid-19 fatigue

http://www.msn.com/en-gb/health/med...post-covid-19-fatigue/ar-BB16mxBk?ocid=ASUDHP

 

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

 

Another news website summarises the news article in DN:

Aftonbladet: Coronasymtom kan vara något annat än covid-19

 

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.

 

Maybe this one?

 

https://www.pslhub.org/learn/corona...s/my-experience-of-suspected-long-covid-r2547

 

Precisely.

 

Prof Garner is now calling what he has “post viral fatigue” https://twitter.com/user/status/1280046339703914496

 

I wonder if it irritates Prof Garner that the 5 Live tweet posted by @Dolphin says "how he's managing long-term fatigue as he recovers" ?

Especially, when he has taken great care to point out what he is experiencing is not just fatigue.

We know exactly how that feels, mate.

 

https://twitter.com/user/status/1280106599844122627

 

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.

 

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.