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

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.

 

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.

 

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

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

 

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.

 

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/

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.

Edit: changed URL.

 

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.

 

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

 

https://twitter.com/user/status/1303402524821598210

https://twitter.com/user/status/1303405885067350016

 

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.

 

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.

 

https://twitter.com/user/status/1303464380688986113

 

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

 

https://twitter.com/user/status/1303418893470494722

 

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

 

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

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..

 

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

 

according to NHS

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?

 

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.