Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact, 2020, Hannah Davis et al

That is not what I meant, I was talking about day to day medicine. Doctors may not know much about ME but I should have been able to go to see a doctor and be asked what symptoms I wanted to talk about then they should have been noted including any changes from last time and if there was anything that could be done for them. Most of our symptoms are shared by other diseases so anything which helps them in, say, MS should also be done for us.

Instead, I never discussed my ME with a GP after diagnosis. Sometimes I would ask for something or see if some new thing was ME or not but it was never about my ME or how it was affecting me. My GP retired and I took the chance on talking about my ME with the new doctor. It was a chance because I did not know what she thought about ME. It was just as likely that she would stop a my medication as she would help me.

It was a genuine fear. In the early days of my diagnosis before CFS was invented my then GP said that I was likely to hear about new treatments before him and also if I wanted to talk about anything book the last appointment of the day. I did this and some things he agreed to and others he did not with a brief explanation.

Then he left and unknown to me the new GP was BPS leaning and interpreted my continuing to do as before as a sign that I was seriously hysterical ...

It shocks me when I discover that some things are taken seriously. I was referred to ENT with hearing problems and it was a taken seriously with a history being taken and an examination. Friends and family talk about get treatment for symptoms I always thought you were just meant to thole.

Basically we should be able to get exactly the same service that is provided for MS and RA even if there is no massive research about cause; something is wrong with our bodies and the medical profession deals with broken bodies. There is a lot that can be done for us as things stand. The submission to NICE from s4ME would be a goods place to start.

Longcovid could be treated the same way, symptomatically but above all sympathetically with no dismissiveness.

 

One of the authors is Brian Walitt. Is that the same Walitt who is a quack who states (without adequate evidence) that ME and Fibromyalgia are psychosomatic? He also says harm can't come to patients if they are left untreated.

 

NIH Directors Blog: Trying to Make Sense of Long COVID Syndrome

https://directorsblog.nih.gov/2021/01/19/trying-to-make-sense-of-long-covid-syndrome/

 

Note how the long covid community obtained NIH funding.

How not to make progress: constant infighting over illness name and diagnostic boundaries and causes while hoping to make progress on a pathetic $5-12 million annual NIH funding and some fundraising.

 

Not that I disagree but the number of people affected, all within a short space of time, and by something that is being taken seriously by the vast majority of the population, and in a period where the internet/social media make connecting and collaborating so much easier have made a big difference for the LC folks.

Whereas, along with the issues you identify, our population has largely built up piecemeal over time, often in small isolated groups with little access to helpful accurate information, and with a long history of dismissal and misrepresentation. We can do better as a population, but also the odds have been against us for a long time.

 

You're right, I had a moment of bitterness there. LC is in very favorable circumstances.

 

There is more money available now than there was when everyone called it ME and agreed on what it was.

If any money had been available for biomedical research in the first decades after CFS (when the problems started caused by the medical world, not the patients) we would have the knowledge to sort out the categories.

 

Through exploiting the guilt of a government who failed to protect (or warn) it's citizens? Through big numbers of sufferers in a short period of time?

 

Yea things can grab public attention and therefore the attention of politicians (& thereby funding) i.e. Long covid. Plus there's a concern about how big Long covid could be.

I don't know how to do double quotes but @strategist seem to hit the nail:
"How not to make progress: constant infighting over illness name and diagnostic boundaries and causes ---"

 

The surveys used for this paper have been open-sourced: https://figshare.com/articles/onlin...ong_COVID_200_symptoms_over_7_months/13642553.

Haven't checked if it's mostly ready-to-use including how to analyze them but it would be incredibly useful to do the same with ME cohorts, there hasn't been any study of the range and timeline of symptoms beyond small samples like Ramsey's.

Frankly this would make a great Ramsey grant from SolveME, I'm sure it can be done handily with those budgets. Or if medical institutions ever get interested in doing relevant research for once, this is cheap enough. I'm sure there would be help and support from the researchers if anyone were to use it.

It would also be very useful for research in any other chronic illnesses, the research space is always limited by the obsession over "primary" symptoms, completely missing the forest for the trees.

https://twitter.com/user/status/1362857471946199043

 

I think they are. I can somewhat remember an online seminar they had and it included long haulers (but my bad memory though...). I just can't use it yet so I can't verify. I don't think it does a history, though, rather than a journal of current symptoms. We have so little information about onset course and early symptoms.

Tying both together would certainly be best, if possible.

 

Doesn't explicitly state this paper but it obviously played a big role in this. Imagine that, patient involvement in research is actually useful, medicine's pervasive refusal does not change that fact, and neither was the initial reaction of some opinion-havers, one who dismissed this paper as "Mickey Mouse research", even though the findings clearly stand both scrutiny and time.

https://twitter.com/user/status/1407045240226291720

 

Something I missed but the person who posted the tweet above is CEO of the Council of Medical Specialty Societies, "representing 45 societies and 800k+ members" according to her bio.

 

Now published, by The Lancet.

https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/fulltext

 

https://twitter.com/user/status/1343293608955404291