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

Were there specific areas of consequential damage with SARS, or were they just completely thrown under the bus?

 

Looking at the long-term studies, it does not appear to have been checked much and only lungs, don't see any heart checks. I mostly see EEG and polysomnography, rest is psychometric or illness questionnaires like checking for fibromyalgia. https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-37

Some evaluation of lung function in this study: https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-37. In the same paper citations 9-19 are other studies but that's too much for me to read and cross-check. Skimming it shows most reported abnormal findings but no one followed up on that.

Most of the focus in the conclusions is over mental health, correctly assuming no one will be working to solve this. Same old. Most of the studies have a very narrow focus and everyone seems to just do their own thing on their own. No coordination. No aim. No focus. It's like failure is baked in the system. Every giant tech company spend more effort and money each and every minute pushing ads to people. Priorities...

 

I too suspect that long covid may well fade away. Classification according to the damage done (lung scarring, etc) is superior to a broad label like long covid. The patients that have such problems will be diagnosed with that. That will leave the ME/CFS-like patients where it's not clear what is wrong. Unless an important difference between the two is discovered, there will be no practical reason to differentiate between ME/CFS and long covid (with exception of research looking at covid 19 ME/CFS).

 

MPs to hold a general debate on long Covid (14th Jan)
https://committees.parliament.uk/co...8/mps-to-hold-a-general-debate-on-long-covid/

 

The Swedish government is proposing 50 000 000 SEK (approx 4 500 000 GBP, 4 900 000 EUR) for long covid research. The decision will be made later this month.

Regeringen föreslår 50 miljoner till forskning kring långtidscovid
https://sverigesradio.se/artikel/7642610

 

https://twitter.com/user/status/1347937648225214466

https://twitter.com/user/status/1347937890173669384

https://twitter.com/user/status/1348165867524259842


https://open.spotify.com/show/0Vf6xdztQkhtt2FAn9e9td

 

The determination not to see ME is almost impressive.

Code:

https://twitter.com/Dr2NisreenAlwan/status/1348707181336653830

https://twitter.com/user/status/1348707181336653830

 

A "new" chronic illness, made up of old diagnoses. Hence why POTS is both brand new but also old, I guess? And chronic pain. Also new. Neurological symptoms, also brand new. Never before heard of those things that have names and stuff. Those dysautonomia patient organizations? All unheard of before somewhere around 2020. Brain fog? Literally doesn't have a name for it and the term was never once used before 2020 also, I guess.

I am not in a good state for diplomatic framing but I'd be curious if someone asked her where she thinks the commonly used terms, like PEM, brain fog and pacing, came from. Especially as PEM is strictly ME.

 

https://twitter.com/user/status/1348707196893339648

 

Not sure who this is, seems to be the journal of a Chicago-based medical society. There is an article on pages 21-22 but it's hard to read in this format, will probably not work well on phones. Includes quotes from Nath and Lipkin, discusses ME/CFS and even presents Lipkin as an ME expert, which must be a bummer to the previous experts on the topic, who in other articles quoting them are merely referred to as "one doctor" and whose "expertise" on the topic is not even acknowledged.

Doesn't appear to be an easy way to select text to quote from it.

https://ziniy.com/newsstand/edition/502

 

oh, what a horrendous online solution for a magazine. Even with noise as you "turn a page"

I hope it is ok to share images with screen shots of the article, as there is no direct link and it was uncomfortable to navigate.

 

Twitter account for the APPG on Coronavirus is https://twitter.com/AppgCoronavirus, incase anybody is interested.

Apparently she hasn't learnt anything about ME in all her time.
https://twitter.com/user/status/1348964694887948289

 

hardly surprising as she has Colin Barton of Sussex ME Society as her source of information.
https://www.s4me.info/tags/sussex-me-society/

 

https://twitter.com/user/status/1348676623973961729

 

Would you seek medical advice from a "life science marketing researcher"?

 

I keep choking over neurological problems, problems with exercise and widespread pain, the very symptoms dropped from ME when it morphed into CFS

 

Open letter to PM Boris Johnson in BMJ:

The risk of long covid must be a primary consideration in policy decisions

We appreciate that decisions on relaxing restrictions are not easy ones for any government to make. However, we urge you not to base these decisions on deaths and hospital admissions alone. It would be very short-sighted indeed to ignore the potential for a huge increase in people with long-term ill-health on top of those already suffering.

 

How do we get through them that it is not the government or the public that has to be convinced to take this seriously? That it's medicine that needs convincing and that it is impossible to do so without acknowledging and fixing the fact that tens of millions already live with these exact symptoms that have been mocked, trivialized and discriminated against forever.

Some badly want to separate themselves from us, not realizing that it's a self-destructive effort that helps no one, even harms them personally. I'm sure they are terrified of the possibility of being crushed by the somatization fad, hence the desperate need for a full and total separation from the much larger crowd of chronic illness. But it is precisely because it is already many times larger than the blip of Long Covid that any chronic illness, new and old, cannot be taken seriously without breaking the entire systemic failure down.

It's frankly odd to have this message of "the public must know of this", when it is the job of health care to do this. Without convincing health care systems, there is no path forward, as medicine will simply block anything and everything that goes against the psychosomatic ideology.

Maybe showing them what the FND/MUS folks are saying? And how it precisely describes chronic illness, that it is why they were gaslighted to begin with. Basically a summary of "this is what those people genuinely believe" and how it's the very thing that is ruining their lives, hence explaining both problems as branches of the same poisoned tree.

The government will not communicate to the public what its own medical advisers are telling them to ignore and explicitly trivialize. It is simply not going to happen. It would defeat the very purpose of having expert advisers.

https://twitter.com/user/status/1349049149858193410

 

Long Covid: Virus 'like Russian roulette' for young and healthy

https://www.bbc.co.uk/news/amp/health-55635451

Not much new to this same old story that may as well be about ME, or fibromyalgia, or dysautonomia, or etc., if not for the context:

It would be more accurate to this that this was one of those "chapter left blank on purpose" thing. Decades of "why do you reject a psychological explanation?" have lead to this. Oops. And obviously this group of GPs is well aware of the whole issue with ME, chronic fatigue and pain as well as FND/MUS and how they fall exactly under the definition, it was literally written based on chronic illness. And instead of fixing this, they want an exemption for themselves.

I saw a few times the APPG live stream and I haven't seen a single person with knowledge of the background and the link to chronic illness in general or ME specifically. Not a single one.

 

https://twitter.com/user/status/1348967091525853187


Wait, I thought people with chronic illness aren't supposed to do that. Weird that they would "enable their sick role".