The Atlantic - Long COVID Has Forced a Reckoning for One of Medicine's Most Neglected Diseases - by Ed Yong

- Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.

https://www.theatlantic.com/health/...c-fatigue-syndrome-doctors-long-covid/671518/

 

They are using the flawed CDC 1994 criteria for prevalence which is misleading. Also the only treatment for ME is consideration.

 

Summary on Twitter from Ed Yong:

 

Always confused when patients or doctors tell journalists that ME symptoms “can be managed w meds”. Can it? Mine is not managed. I saw two ME specialists and nothing they gave me either made sense or helped. (Edit to add: I actually got sicker trying nearly every med recommended by ME specialists. Anti-virals, antibiotics, LDN, plaquenil, Florinef, abilify — all made me sicker w side effects, and mestinon didn’t help. I declined to try a stimulant as didn’t think speed would help. Supplements they raved about did nothing.)

A patient quoted in this article says that “all the tests were abnormal” when run by an ME specialist. Really? Which ones?

I am grateful to Ed Yong for continuing to write about us in a major publication — he’s doing us a huge service. BUT these articles often have inaccuracies and repeat a lot of loosely formulated ideas or opinions as facts (such as the EDS connection).

And, telling the world and doctors that an appt w an ME patient will take an hour, and require a book of homework is not really helpful. All diseases are difficult to manage and people have ranges of symptoms and need personalized care. People aren’t going to get hour plus appts — the system in most countries is not set up that way. So setting out an expectation that this is what’s needed just doesn’t help. Some ME specialists charge 600 — 800 for these very intensive appts and I’m not sure they really help people that much, except to feel listened to.

 

Continued:

 

Thank you very much Ed Yong!

Bringing awareness of these pressing issues to a wider audience is vital.

There are a very limited number of ME specialists in Canada too.

I recently talked to a young doctor who had never heard of ME....still!

The ME knowledge crisis is the result of decades of engineering by a coalition of forces who have worked to sideline, stigmatize and otherwise "disappear" complex chronic diseases. Now, pwLC are also paying the price.

 

The M.E doctor I saw managed M.E symptoms with sleep and pain meds.

 

I don't really see a lot of point in ME/CFS and Long covid specialists at this point if they aren't doing research. Your local GP could be throwing pain and sleep meds your way to reduce the severity of the condition and a leaflet on the condition and how to pace with a link to the guidelines. Then the rest of the money ought to just go into research projects looking for root causes and testing promising drugs in trials. There just isn't a lot of point wasting vast sums on clinics everywhere that have nothing to offer patients other than a leaflet on what they have and how to pace. Doing basic tests on 20,000 patients is pointless, 5 novel tests on 10 patients makes a lot more sense.

My experience is so far post NICE and Long Covid not a lot has changed with doctors, 9/10 are still a problem. I am not seeing the script flipped and I am not seeing more than about 1 in 10 long haulers on social media suggesting they got anything but gaslit by doctors. Quite a few have even got into clinics and then been suggested exercise. I am not as optimistic that Long Covid has done anything but cast shade on ME/CFS at this point, reproduced a lot of research as if it was novel and suck up the funding and time and research. I still don't think the opportunity around Long Covid, to see it develop in real time and try to catch the first thing that goes wrong, has been attempted yet so we still don't have that potential root cause of all the downstream stuff to follow and the chance of getting it is fading with time.

 

@BrightCandle, I share your concerns, that there might be little progress with LC and in turn ME.

You bring up a good question: what help have pwME received from ME biomedical experts.
It would be interesting to see.

I received a recommendation for melatonin, yoga, which I already did, and pacing, which I have long done as a combination: both using planning, as well as being forced to by ME symptoms - OI, muscle pain and fatigue.

There were no ME experts available until my 18th year with this disease. Before that, advice from GPs was minimal; still is.

Twenty years on there is some more information. The NASA lean test for example.
And, a few ideas for other tests and treatments. As well, some governments have moved to recognize ME as the debilitating disease it really is.

Though overall, I do wonder if there will be any real and effective changes in the next few years.

 

This is fantastic. We're getting a level of media coverage that's significantly higher than even a year or two ago. (Am I right about that? I've only been part of the ME community for about a year.)

 

@RedFox

It certainly seems there is more frequent coverage. Perhaps from more varied media outlets. Although the media involved may be the ones so inclined to cover this type of issue anyways.

An actual look at the numbers, and from where the articles originate would be interesting, and could assist with future media contacts.

 

I think so too. I've done an annual compilation of the biggest ME articles mentioned in the weekly news brief and these are the results so far:

2019 - 10 articles
2020 - 46 articles
2021 - 99 articles

Long Covid and the NICE guideline are probably important reasons for the increase in number, and I've also included more articles from local media, but yes, there seems to be a positive trend here.

 

Ooh good @Kalliope . I'm glad the trend in coverage is not just my perception.

 

Thank you very much @Kalliope for the count. The trend is encouraging.

 

Senator Ed Markey (Massachusetts) quote tweeted this article today, adding:

"ME/CFS was America's hidden health crisis long before the pandemic. Now, COVID long haulers are experiencing its debilitating effects. That's why I'm pushing for $27 million to study the intersection of COVID and ME/CFS, and for medical education on the diagnosis and treatment."



Link to tweet:

 

Senator Markey is my senator and while I appreciate this because it’s better than nothing (Stockholm Syndrome), I would have also liked to see tweets pushing for ME/CFS funding commensurate with disease burden, homecare/paid carers, and for members of congress to do something to get us out of poverty; which is a disease and trauma in and of itself that is perpetrated against us.

When I say get us out of poverty, I mean benefits so we can live like free human beings with choices, not more programs that don’t work and with middlemen making money off of us that would be much better going directly to us.

Also, where is the congressional investigation into how this situation came to be in the first place? We deserve justice and there needs to be consequences for what has been done to us.

 

I tried to see if he'd sponsored any specific pieces of legislation related to the matter, but unfortunately, I couldn't find any. However, I did find this:
Markey Leads Resolution Recognizing ME/CFS--May 15, 2018
It shows he's been advocating for us long before the pandemic made it "fashionable".
I'm not sure why I couldn't find any mention of him proposing legislation to fund ME research or education, but I have a wild guess.
Quick politics lesson for those of you across the pond: For a bill to become law, it must be approved by both houses of Congress (the Senate and House of Representatives), then get signed by the President.
But there's this obscure rule in the Constitution that all funding bills must start in the House. So maybe that's why he hasn't unveiled any legislation? A couple bills on Long Covid have been introduced in the House, but none have gotten passed and made it to the Senate.

 

Markey has been one of the most consistent politicians on this issue, goes back several years. I don't think the details have been public but he was likely involved in the $1.15B NIH funding, there are basically a handful of supports in Congress and he's the most prominent one.