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I partly agree, but there has been some separation. For instance, Q-fever fatigue syndrome has tended to be separated out. I recall the comment made by an (off-screen) doctor during the 2019 Emerge conference that QFS and CFS were definitely different because the people who get QFS are quite different to the people who get CFS (i.e. presumably, in his mind, more male, rural, phlegmatic).

Possibly even post-Ciguatera fatigue will eventually be seen as part of ME/CFS. It's difficult to know exactly what should and shouldn't go together when we don't know the causes.
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.
 
Yes, that's true. This might be a good opportunity for a prospective study, following the longterm outcomes of people infected by Sars-Cov-2.
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?
 


One element of that has been to plan an investigation of the effects of COVID-19 infection in our own UK ME/CFS Biobank cohort. We intend to investigate the effects of suspected or confirmed COVID-19 infection in the ME/CFS Biobank cohort of consenting participants, and to compare those of our participants with ME/CFS with those with Multiple Sclerosis (MS) and “healthy” individuals.

Separately, we have also been following research about people who may be at risk of contracting ME/CFS after COVID-19, such as that from the University of Leicester. This research is still at a very early stage, but the team is rapidly developing ideas and exploring funding opportunities to research ME/CFS after COVID-19 with a new cohort of participants, in the UK and worldwide.
 
I think it's the former because something very similar happened to me. Six weeks after getting EBV, I was still horrendously ill and the GPs I'd seen were clueless.

My flatmate pointed out an article in the newspaper about an Australian Rules football player who had CFS and said "I hope you don't get that". I replied that it was unlikely because I was experiencing the same viral symptoms as when I'd first come down with EBV. I felt ill not fatigued.

In my experience, most doctors are completely ignorant and believe that CFS = fatigue. For example, three different specialists all told me that it was "impossible" for me to have insomnia because everyone knows that people with CFS are tired and spend all their time sleeping.
This
 


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.
 
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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
 
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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.
 
A follow up post on Reddit.
Hi all, thought I'd do an update as I had some questions and I'm in need of help. Id like to know if what I'm experiencing is in-line with what CFS/ME'ers experience and if there's any help I can seek or things I can do to ease this up even just a little.

I don't seem to be getting better from covid19 in the way you'd normally expect to ride over an illness. If anything the symptoms are becoming more impactful as I'm nose diving mentally.

Check out my post history if my illness progression is of interest; I have experienced a whole range of symptoms that I won't include here but for now this is the worst of this week:

  • nausea

  • sweating

  • heart rate spikes and stabbing heart pains

  • muscle cramps, spasms and aches

  • joint and bone sharp knife like pains

  • non-localised nerve pain

  • what feels like blood constriction in my extremities

  • forgetting to breathe whilst asleep

  • sore eyes/sunlight too much for eyes

  • intense brain fog

  • balance issues

  • tinnitus

  • night terrors/ waking up unable to relax

  • post exertional malaise/ pain increases

  • neurological/cognitive deficits

  • fatigue without relaxation or tiredness that won't leave (least of my issues)
All of these symptoms seem cyclic in nature but never really leave, the pains travel and come and go in intensity within hours. For example, yesterday my glutes were on fire like I had lactic acid built up for hours on end; today my whole upper body and head just hurts with a intense non localized pain. I don't even have the words to describe it; It's like my nerves themselves are under some sort of attack. it hurts an incredible amount.

I've been resting as much as I can but I do have to cook and wash for myself as I live alone and have been isolating now for roughly 11 weeks. I managed to get some food shopping on Tuesday as I had a break in the pain and I've paid the price for doing so since.
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https://www.reddit.com/r/cfs/comments/gleu3y/update_i_caught_sarscov2_and_now_im_experiencing/
 
"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.
 
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