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

That seems expected. The acute illness caused by each virus is slightly different, it's only natural that the chronic illness will have differences. It's the same fundamental problem with differentiating COVID from other respiratory viruses: they look so much the same. The commonalities and impact on patients is still what should count above all else.

But one thing that is clear is that even suffering a few weeks of prolonged illness from a virus is not something that medicine accepts and here, again, it is causing unnecessary distress and confusion, impairing progress and causing harm. These patients are facing the same grotesque denial of care, being insulted on top of their illness, and for the exact same reasons that we are. The reasons cannot be separated here, these people are suffering precisely for the same reasons we are: denial of a clear medical problem that medicine refuses to consider a problem worth solving. It's a "you" problem, not a medical problem. On all counts it is morally and intellectually wrong.

Even if it only means correcting this we will make progress. No one should have to suffer the tyranny of being ill only to be told by medicine to go away, even be insulted in the process. Not for decades of illness anymore than for weeks of illness. Even if the disease is not identical, the underlying problem is one and the same, and so is the solution.

 

To be clear, what I think would be ideal is a prospective study that starts tracking various health parameters (eg, immune function, various biomedical data points, 2-day CPET, psychological profile, medical history, Sars-Cov-2 status, etc.) in a large population of people before they contract Sars-Cov-2, then continues to track this data, illness, and recovery (or not...) afterwards.

Are any big epidemiological studies of this sort under way? What level of funding would be needed to get a statistically significant sample size? Who would fund a study like this?

 

This

 

https://twitter.com/user/status/1261993717591871488

I have already tagged a number of entities and individuals on Twitter.

 

https://twitter.com/user/status/1262049476702855170

https://twitter.com/user/status/1262049574811832323

https://twitter.com/user/status/1262049933491830785

https://twitter.com/user/status/1262050737162457089

https://twitter.com/JTSglobalhealth/status/1262051298335174657

 

https://twitter.com/user/status/1262081243845480450

 

I am concerned. This is the second tweet that seems to imply she believes ME=chronic fatigue.

I do understand that social media isn't the best medium to discuss these things but if the starting point if that chronic fatigue is ME rather than simply one symptom of the many that some suffer they'll be starting out on completely the wrong track.

This won't do us any favours.

 

https://www.ft.com/content/91e4482e-d120-49ab-93e3-d314d99b5336


Mystery of prolonged Covid-19 symptoms adds to unknowns
Growing evidence that some sufferers have to endure problems from fatigue to organ pains for six weeks or more
When Rachel Pope was diagnosed with suspected coronavirus, she did not know it would take a month before she would start to feel better. Or that she would “relapse” the following week, with terrifying kidney, heart and lung pains.

“It’s very scary,” said the UK-based lecturer, who as of Sunday was on day 70 of her symptoms. “It’s been very changeable — I think as it works its way through different systems.” The woman she suspects she caught the virus from, who first felt symptoms three months ago, is still suffering from fatigue.

The two are not alone in their prolonged illnesses. Around the world there is growing evidence of people with confirmed or suspected Covid-19 suffering symptoms for six weeks or even longer — one more mystery to add to the list of unknowns about the virus and how it affects the human body.

[...]

 

The idea that people can have longer term issues after an illness is not new.

We have a word for it - convalescence.

That word has been around a while.

It was not a revolutionary idea when I was growing up.

As far as I am aware it's only become a thing that people are ill, and then, after an alloted illness specific time, they are not ill, no matter how they feel, so should return to work, since the late 80s, maybe early 90s.

Coz now things work like that, nature reads medical text books written by us.

So, now we have a virus, affecting people in much the same way as viruses always have. People catch it, they get ill, to varying degrees, some recover, some need to convalesce - but suddenly this is unheard of, lets all run around like chickens with less than the average number of heads that live chickens mostly have.

Medical science suddenly has no clue that this is what happens with some things, it's forgotten.

I wonder what else has happened in 'medical science', what philosophies have become dominant, that might explain why medicine has suddenly never seen the way these things sometimes go. It couldn;t be anything to with having spent the last 40 odd years denying it, in the face of all the evidence. It couldn't be 40+ years of believing that all that exists, or can possibly exist, is what's in a textbook - and that anything else must be down to the patient being a wimp, or soft in the head.

I, with no evidence, and no medical training, do not know if anyone will go on to develop ME as a result of covid 19. I do think that many, many, people will need to convalesce, possibly for extended periods.

Because this is how disease works.

Some people may go on to develop ME - I have no idea, I have no idea what ME 'is'.

I do know that pushing, being told to ignore symptoms and go to work, before the body is ready, is bad, for the body, and the health.

Everybody, other than doctors, knows this, apart from those whose living depends on not knowing it, and often patients.

 

From my own personal experience I think it’s to early to talk about it being post viral. What’s interesting is it’s making me re-think the whole concept of ‘post viral’. And I think this may help the medical community re- think it too.

People with protracted covid are forming their own support communities. Some of the people with protracted covid also have ME/CFS like me.

I’m a member of the ‘60 days plus’ group on the Slack app along with around 2400 others.

The most notable thing for me is that everybody is noting that protracted COVID symptoms are exacerbated by exertion. These symptoms include chest pain, breathlessness, sore throat, muscle aches, dizziness, fatigue, increased temperature, malaise, and a whole range of others.

I think we should be focussing our efforts on learning from what’s going on with them and the similarities between the illnesses, particularly the exertion link.

Also I have had experience of quite a few medics in one way or another over the past 10 weeks including a trip to A and E when my ankle swelled along with worsening chest pain so NHS111 sent an ambulance.

The assessing A and E doc was pretty awful; the paramedics were truly wonderful. I force myself to hold on to the positives.

Most of the medical staff I’ve encountered have been supportive and honest and said this is all so new they do not understand it and do not know what is going on but they have tried to help me and have treated me seriously. Several have said it’s important to rest.

Protracted COVID patients are making up their own minds. I really don’t think they need us right now but I do think there is a huge amount we can and should be looking to learn from them.

edited for typos

 

I agree.

 

Would it not be sensible to store longitudinal blood samples as part of Janet Scott's study? @Tom Kindlon

 

I view this is an opportunity to build coalitions to help solve ME/CFS.

The coronavirus pandemic makes it even more clear that medical research has neglected an important health problem, that of long term symptoms after an infection. If long term covid-19 isn't exactly the same as ME/CFS, does this change much? Probably not. Just don't let people pretend that they are radically different because ME/CFS isn't a serious illness or something along these lines.

The important thing is to understand why these long term symptoms exist in some people. Then we can prevent, treat and cure.

 

It's also impressive how well the people with long term covid-19 are dealing with this. They have already organized themselves in groups. The internet makes that possible. This will help them, and perhaps us as well.

 

https://twitter.com/user/status/1262357295436042240

 

A follow up post on Reddit.

Copy and paste link below

Code:

https://www.reddit.com/r/cfs/comments/gleu3y/update_i_caught_sarscov2_and_now_im_experiencing/

 

https://twitter.com/user/status/1262133306109427712

 

"what feels like blood constriction in my extremities"

I had this when I was experiencing an 'immune response' after relapsing on antivirals. It was very bizarre, my legs were ice cold and stiff, it felt like my blood circulation had stopped. My arms were also affected.