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

[rvallee]

I'm actually expecting that the NHS will stick with GET, CBT, BPS and the MUS approach for long Covid. British sufferers can only hope that researchers and medical staff in the rest of the world will do something to help them. They are not going to get any help here in the home of the BPS rubbish.

Without significant pushback this is certain, it is the current plan. The pushback will be many times more significant than what the ME community has ever done, combined.

Without the Internet, medicine would have completely missed and buried this. This time it's too visible, too public, too large and, especially, impossible to erase by archiving away into third basements. Ironically without very specific political circumstances paving the way for very incompetent populist governments to make the problem far larger than it would have been otherwise, it may have happened again. But with the numbers completely out of control, especially in the US, the cost of ignoring this will be too large to bear. Especially thanks to the few success pwME and the competent researchers have had.

 

[rvallee]

LBC (Leading Britain's Conversation)

'Long covid' sufferers tell of battling debilitating symptoms that last for months

For Prof Garner, who regularly writes for the British Medical Journal on the topic, he compared his "extremely similar" symptoms with that of chronic fatigue syndrome (ME/CFS).

He added: "No-one wants to go there because of the stigma. But the ME/CFS community have been really helpful and they have fantastic tools and things to help.

"Problem is that GPs in this country think ME is a psychological disease. Some people that have had CFS/ME and that now have Long Covid said this is different."

Again, so much for the "fashionable illness label" and "wanting to adopt the sick role" by latching on to a scary-sounding chronic disease.

Not that this trope was ever credible but it's still widely believed, which is an incredible failure by itself.

 

[Sly Saint]

3rd September
Support needed for patients with ‘long Covid’, MP says

Patients who are suffering longer-term effects from Covid-19 need financial support, an MP has said.

The causes of so-called long Covid are still unknown and it is a growing area of medical research.

SNP MP Carol Monaghan (Glasgow North West) urged the Government to outline what benefits will be made available for those unable to return to work due to the severity of their symptoms.

Commons Leader Jacob Rees-Mogg said the welfare system already supports people with long-term conditions.

https://www.campaignseries.co.uk/news/national/18695246.support-needed-patients-long-covid-mp-says/

 

[Arnie Pye]

"Some people that have had CFS/ME and that now have Long Covid said this is different."

Let's assume that ME is always a result of the body not recovering from an unspecified virus. Expecting everyone's symptoms to be exactly the same irrespective of the actual virus that triggered the problem seems to be illogical to me. Does everyone on this forum have exactly the same symptoms? Somehow I doubt it.

 

[Dolphin]

Let's assume that ME is always a result of the body not recovering from an unspecified virus. Expecting everyone's symptoms to be exactly the same irrespective of the actual virus that triggered the problem seems to be illogical to me. Does everyone on this forum have exactly the same symptoms? Somehow I doubt it.

Also there are probably lots of the same symptoms that don’t get noticed: only new ones or maybe even ones they had previously that had abated. Then if others have all of the same symptoms they may never go for testing because they won’t notice anything different so the sample may be biased; or they might be less inclined to comment.


Hopefully good research will find answers.

 

[rvallee]

Short and long term health effects of COVID-19

https://post.parliament.uk/analysis/short-and-long-term-health-effects-of-covid-19/

https://post.parliament.uk/short-and-long-term-health-effects-of-covid-19/

• There is emerging evidence that COVID-19 affects many systems of the body, with patients reporting a wide range of symptoms.
• ‘Long-haulers’ are patients who experience ongoing COVID-19 symptoms for several months after infection. These include fatigue, difficulties in thinking, shortness of breath, chest pain, irregular or abnormal heart rhythm, and joint pain.
• Patient-led initiatives, such as the Patient-Led Research Team or Long COVID SOS, are conducting research and campaigns to support the recognition of the debilitating effects of ‘long COVID’.
• There is emerging evidence on the long-term health effects of COVID-19. These include long-term respiratory complications, thrombosis, heart failure, kidney injury, fatigue, joint and muscle pain, and metabolic abnormalities.
• Long-term cohort studies are needed to better understand long-term disease consequences in COVID-19 patients.
• UK-based initiatives, such as the post-hospitalisation COVID-19 (PHOSP-COVID) study and the Research and Innovation for post-COVID-19 Rehabilitation (RICOVR), are currently investigating the long-term effects of COVID-19 and its rehabilitation.
• This is part of our rapid response content on COVID-19. The article will be updated as the research progresses. You can view all our reporting on this topic under COVID-19.

The UK medical system has been a breeding ground of quackery and promotion of pseudoscience for decades on this topic, but right now it is the fastest-moving to respond to the issue. So credit where it's due, hoping this ability to push everyone in the same direction can be used for good, by actually pushing in the right direction.

According to a 4-year follow-up study, almost a third of SARS patient reported post-infection fatigue that resulted in a diagnosis of Chronic Fatigue Syndrome (CSF). CFS is a long-term illness with several symptoms, including extreme tiredness; sleep problems; muscle or joint pain; headaches; problems in thinking, remembering or concentrating; and fast or irregular heartbeats. Even though long-term symptoms reported by long COVID patient organisations show similarities with CSF symptoms, the NHS guidelines state that there does not appear to be an association between COVID-19 and CFS.

The bolded bit is evidently a problem. NHS guidelines are seriously, really, very, all-the-adverbsy bad at times.

Edit: changed URL.

 

[Mithriel]

"Some people that have had CFS/ME and that now have Long Covid said this is different."

If someone has "had" ME (and calling it CFS/ME is a bit of a give away) there is a good chance they had chronic fatigue from burnout or a time limited post viral because there is no real evidence that anyone recovers from true ME just some learn to pace well enough to live normal life.

 

[Mij]

Last week, the rheumatologist officially diagnosed me as having myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It’s essentially a rule-out diagnosis — it can be diagnosed once other health problems are ruled out — so there’s no test for it.

One of the main features of ME/CFS is called post-exertional malaise (PEM). Essentially, when you extend more physical or mental energy than you are able to, you crash. That is exactly what happens to me.

The challenge I’m having now is that there is no real treatment for ME/CFS, although I have a massage therapist who was trained to treat chronic fatigue syndrome. The treatment is not like a traditional massage, but rather a very gentle lymphatic drainage series that she does with me weekly. I do it at home now, too. My main doctors — my primary doctor, neurologist, and rheumatologist — have all admitted they don’t know much about CFS or how to treat it.

https://creakyjoints.org/living-wit...ovid-19-long-hauler-chronic-fatigue-syndrome/

 

[Tom Kindlon]

 

[Trish]

If someone has "had" ME (and calling it CFS/ME is a bit of a give away) there is a good chance they had chronic fatigue from burnout or a time limited post viral because there is no real evidence that anyone recovers from true ME just some learn to pace well enough to live normal life.

I don't think it's fair to make such assumptions.
It is perfectly possible that some pwME will experience different symptoms post Covid - it is all completely unknown at present.

 

[Kalliope]

Short and long term health effects of COVID-19

https://post.parliament.uk/analysis/short-and-long-term-health-effects-of-covid-19/


The UK medical system has been a breeding ground of quackery and promotion of pseudoscience for decades on this topic, but right now it is the fastest-moving to respond to the issue. So credit where it's due, hoping this ability to push everyone in the same direction can be used for good, by actually pushing in the right direction.

The bolded bit is evidently a problem. NHS guidelines are seriously, really, very, all-the-adverbsy bad at times.

The reference is to p. 20 in the NHS document Aftercare needs of inpatients recovering from COVID-19 (2. version) where it is stated:

Although some people who have had COVID-19 may experience post-viral fatigue, there does not appear to be an association with post-viral fatigue and diagnosis of chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME). For those who do experience chronic fatigue, there is conflicting evidence regarding benefits or harm of pacing. Graded exercise therapy (GET) should be offered to those with mild or moderate CFS and only provided to those who choose these approaches.

There are no references to who has come to this conclusion nor how it was reached. The quote above is underlined in yellow which means it is one of the key changes from the first version.

 

[chrisb]

That is a very poorly drafted document. It seems to set out to describe the needs of people on discharge from hospital. That comment about "some people who have had COVID-19" appears much broader in intent but possibly outwith the remit of the draftsmen or women.

 

[Dolphin]

 

[Amw66]

Short and long term health effects of COVID-19

https://post.parliament.uk/analysis/short-and-long-term-health-effects-of-covid-19/


The UK medical system has been a breeding ground of quackery and promotion of pseudoscience for decades on this topic, but right now it is the fastest-moving to respond to the issue. So credit where it's due, hoping this ability to push everyone in the same direction can be used for good, by actually pushing in the right direction.

The bolded bit is evidently a problem. NHS guidelines are seriously, really, very, all-the-adverbsy bad at times.

Divide and perpetuate.
ME/CFS was always going to be not like COVID to enable the denial, and careers to conti ue

 

[Amw66]

 

[Snow Leopard]

The bolded bit is evidently a problem. NHS guidelines are seriously, really, very, all-the-adverbsy bad at times.

How can they say "there does not appear to be an association" when this hasn't been studied at all?

 

[Sly Saint]

NHS guidelines

they appear to have been updated (aug 19) and now read

Of people who have been critically ill, 10% could develop chronic fatigue. Although some people who have had COVID-19 may experience post-viral fatigue, there does not appear to be an association with post-viral fatigue and diagnosis of chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME). For those who do experience chronic fatigue, there is conflicting evidence regarding benefits or harm of pacing. Graded exercise therapy (GET) should be offered to those with mild or moderate CFS and only provided to those who choose these approaches.
• Considerations: Early identification of fatigue and implementation of fatigue management strategies into daily life are very important and an individualised person-centred approach must be taken. Fatigue management consists of sleep hygiene, energy conservation techniques, prioritisation, gradual activity engagement, and appropriate nutrition.

in italics the bits that have changed since first draft.

eta: 'benefit or harm of pacing' ???

eta2: amazing how chronic fatigue = CFS or ME only when it suits them, and now it doesn't..

 

[chrisb]

How can they say "there does not appear to be an association" when this hasn't been studied at all?

This is evidence basedmedicine. They have said it. What more evidence could be required?

 

[Sly Saint]

How can they say "there does not appear to be an association" when this hasn't been studied at all?

according to NHS

Causes of chronic fatigue syndrome (CFS/ME)
It's not known what causes CFS/ME, but there are a number of theories – for example, it may be triggered by an infection, or certain factors could make you more likely to develop the illness.

Suggested causes or triggers for CFS/ME include:

• viral infections, such as glandular fever
• bacterial infections, such as pneumonia
• problems with the immune system

this page was supposed to have been reviewed in May 2020 (I see they have reviewed CS video),

so are NICE now saying that they have ruled out viral infections or bacterial infections as a possible cause? Based on what evidence? or is it only Covid-19 that is the exception?

 

[Shinygleamy]

Divide and perpetuate.
ME/CFS was always going to be not like COVID to enable the denial, and careers to conti ue

They are going to try and keep M.E. and covid people separate just in case they have to make consessions to Covid folks (such as dispensing with exercise therapies). This is why we need to make sure covid and M.E. folks keep together. Some covid folks are now being diagnosed with M.E. it's in patients interests to make M.E. policies part of their interests. For our part, M.E. folks know a lot about the state of affairs which gives covid folks a terrific head start, stopping detrimental attitudes to long covid before they get established.