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

Opinion piece in the BMJ: "Learning from doctors with long covid"

https://blogs.bmj.com/bmj/2021/02/26/learning-from-doctors-with-long-covid/

 

Re. the opinion piece:

In other instances, such behaviour has been labelled very negatively.

 

Yes. My first thought was that they were grossly neglecting the possibility of perpetuating factors, such as secondary gains. Must be nice getting to laze in bed all day without having to pull 80 hour weeks, after all. Furthermore, patient group membership has been shown to perpetuate illness behavior in postviral disease, therefore physicians should be discouraged from participating in groups such as Burns and Warren's "Doctors in Distress."
And they most certainly should be ineligible for disability benefits.

 

What I read from this is a frank admission that doctors do not understand the experience of illness until they personally experience it and I don't understand how it's not considered alarming because it's true and probably the main reason why medicine makes so little progress.

I also see no self-reflection over how they are essentially saying the same things patient communities have said for decades, seemingly unable to make the connection because all they know is their current experience, which they want to end, but the lack of self-reflection suggests they would go right back to dismissing cases like theirs when back on the right side of the desk. They would be quite content with keeping us in that same experience they alarmingly want out.

Not much learning going on. I've noticed that medicine is still firmly anchored on hoping it all just goes away magically and not change anything about the system that completely missed out on yet another instance of a thing that happens all the time. That's completely derelict at this point. Medicine's inability to learn from experience is unacceptable.

"You'll be better in 2 weeks". "You'll be back to normal in 2 months". "Give it 6 months". "We have determined that the predicted date of the end of the world was incorrectly calculated and will actually take place next year on the same day". Behavior that leads to ridicule from doomsday cults are considered perfectly normal in the profession that legally holds the strict monopoly on life death. Not ideal.

 

I will try and see if I can find it

 

Quite so, and imagine the comments from the medical profession if PWME had ever called a group "ME patients in Distress", the medics/media/benefit agencies would have had a field day, saying that it confirmed it is psychological, with indulgent, attention seeking patients focusing on being distressed.

 

It makes one wonder what conversations must be like in the Wessely/Gerrada household when CG seems to be supporting these doctors in everything to which SW was opposed.

 

I didn't see it this way - I thought she was using this to try to influence and control the agenda, taking the opportunity having cloaked herself in the issue of "the mental health of doctors" recently.

(As an aside, I have read some of her views on this topic. They are quite non-standard, it has to be said. I doubt people have read them.)

 

I don't know if this question has already been asked but if we didn't know that Covid-19 existed as a virus what would all those people suffering from Long-Covid have been diagnosed with if they had gone to their doctor with the set of symptoms of Long-Covid but with all the blood tests coming back negative?
I can't help but think they would by now have been given the ME/CFS diagnosis.
If not, what would they be diagnosed with?

 

How can I watch the entire episode from the US?

 

You might be able to view it on iPlayer with VPN set to UK.

 

I have had ME/CFS for over a decade (20 years if you count the first time I was diagnosed as a teenager). 11 months ago I got sick with likely covid (no testing available). It was a very mild acute infection. I am still sick, however; a lot worse than I have ever been. I had improved a lot prior to covid, and am now house/bedbound. It's like ME/CFS with additional chest symptoms for me, and some other stuff that wasn't happening before but would likely have been (and has now been) ignored. The PEM came back forcefully and has worsened throughout the year. So, yeah, anyone competent at diagnosing ME/CFS would definitely have given me an ME/CFS diagnosis.

It seems that many people are having similar ME/CFS like symptoms. At first I thought maybe I was part of a small subset, given my previous illness. Having read about others' experiences, though, it's hard not to think that covid has led to ME/CFS in quite a large subset of patients. It's becoming increasingly frustrating that this is not really being discussed. If it wasn't for a pandemic, we'd be new ME/CFS cases - if diagnosed.

 

Sorry to hear about the very difficult 11 months you've been experiencing @Ariel
We can only hope that the research into Long-Covid will give us some answers to our health problems.

 

In much of the world it would be considered a functional neurological disorder. Hysteria. Psychogenic. In other words, a psychobabble diagnosis. If they had a doctor knowledgeable about ME or CFS then they might have gotten that, but then they would be in trouble with insurers and government agencies not accepting the diagnosis. Many with ME and CFS seem to settle for a diagnosis of depression for a while as it assists them in getting help they would not otherwise get.

One of the more absurd claims that goes with this is that mass hysteria can be shown because more women get ill than men. Tell that to those with MS and other immunological disorders!

They forget the history that in epidemics that gave rise to ME it was doctors and nurses who got sick the most. More women tend to be nurses, but lots of male medical staff got sick too. There is a caveat on this though. In the 1934 Los Angeles County Hospital outbreak, which really started in 1932 with a few sporadic cases, it was doctors and nurses who were investigated most, and for whom we have records. Thousands in the general public also got sick, and this was noted in the official US government report (well worth reading but very long). By the time the psychobabble crowd got involved most of the medical community had forgotten how many doctors and other medical staff got sick.

Will history repeat itself? I hope not. In any case the amount of funding being given to long Covid is more than ME or CFS ever had. We can hope. With social media assisting the now sick medical people I am hoping they can organize better than their predecessors did. An organized medical community will be vastly more effective than the disorganized sick doctors in history.

 

Twitter bio to Prof. Akiko Iwasaki:

We study innate and adaptive immunity to #viruses and #cancer. #COVID19 #immunology #vaccines
@HHMINEWS
@YaleIBIO
@YaleMed
@YaleEMD
@YaleSPH
.

She mentions ME/CFS towards the end of the thread

 

Thanks @John Mac I appreciate it - and I really try to have hope about the research, although things can seem fairly grim!
I don't want false hope, and I am not sure what is realistic. I really appreciate this forum. <3

 

Opinion piece by three ME doctors/researchers from the Gottfries ME/FM clinic in Sweden (which sadly closed down last year).

Använd ME-forskning för att behandla långtidssjuka i covid
https://www.gp.se/debatt/använd-me-forskning-för-att-behandla-långtidssjuka-i-covid-1.41989524

Google Translate, English

 

Decent article, although the words neuropsychiatry and rehab medicine trigger a visceral response in me. The authors have all been involved in biomedical research for ME, however. I hadn't heard of Gottfries and his weird origin story until now. The article is a bit on the nose about the fact that they were all involved in B12 research, though.

I do not understand why it constantly needs to be reiterated that ME and LC are not identical. Most pwME wouldn't even have the temerity to state that two cases of ME are identical. ME is a clinical entity based on symptomology, the diagnosis of which does not allow inferring any underlying pathology. Any stronger claim than that is overreaching it, and the authors should understand best how little actionable insights these "decades of careful research" have actually wrought. Personally, I'd sketch out when the natural recovery from LC approaches asymptote, and diagnose ME then, but eh, at this point we're just about sidelined at any rate.