CDC and #MEAction: ME/CFS Resources for Medical Students - Flashcards

[Hutan]

It was good in the sense that it showed some normal wrong answers. But ‘increasing or decreasing activity based on symptoms’ sounds like a surefire way to crash repeatedly - at least for someone new to the game. Isn’t the purpose of pacing to avoid PEM?

I suppose it depends on the granularity of the assessment of symptoms. As in 'did my activity last week cause PEM? If yes, I should do less this week.' Versus 'do I feel fine right now? If yes, I can keep doing what I am doing'.

You are right @Utsikt, that the question and answer does not differentiate the two approaches, and that is a problem.

 

[Utsikt]

It’s a FOSS project.

What’s FOSS?

 

[Yann04]

Free and Open Source. Ie. the software isn’t proprietary, anyone can distribute it share it edit etc. It’s public domain. Usually FOSS projects are made by volunteers or non-profits.

 

[BrightCandle]

What’s FOSS?

Free Open Source Software.

Refers to software that is free to download but also will access to the source code so you can change the program as well and has rights in its license ensuring that is the case and potentially any modifications you do must go back to the project.

 

[Utsikt]

@Hutan my exeperience coming from three years in the LC community, is that new patients need crystal clear instructions. If not, they are going to try and twist anything into ‘this is probably fine’ or ‘I can do just a bit more’ or ‘I can’t possibly give up X’. Or they are unable to see the logical consequences of a ‘rule’. I struggled with this myself.

Learning to pace is extremely difficult, because it means coming to terms with the severe limitations of your new life with a terrible illness. And you’re going to fight against that because you want to keep as much of your life as possible. And everyone around you are going to encourage you to do more. Or say ‘don’t you want to do this’ or ‘we have to do X because that’s how we’ve always done things’.

The new patients need someone to tell them and their family that avoiding PEM is the number one priority. Logic decides, and then you have to deal with the emotions that arise because of it - for everyone involved.

Which convinced me that superficial flashcards on PEM and pacing is a bad idea. But if I had to make something on pacing, it would be

1. stop before you get instant or delayed symptoms
2. long and uninterrupted rest is often required
3. PEM can last for days, weeks or months
4. PEM means you have to rest and avoid further worsening until you don’t have PEM anymore
5. Bonus: if you’re unsure, assume you have PEM

 

[ahimsa]

What percentage of people with Long COVID are estimated to meet the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
A: 50%

There were at least three early studies that showed somewhere around 50% of Long Covid patients met the ME/CFS criteria. A quote from one of those studies:

"In our observational longitudinal PA-COVID Fatigue study of PCS [post-COVID-19 syndrome] patients with persistent moderate to severe fatigue and exertion intolerance for more than six months after mild to moderate COVID-19, we found that approximately 50% of patients fulfilled the diagnostic criteria of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), but many PCS patients not fulfilling these criteria were equally impaired"

source = https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-022-03346-2

Three of these studies are cited on the meaction website here (links in second paragraph):

https://www.meaction.net/long-covid-me-understanding-the-connection/

Are there newer studies that show different numbers?

 

[Utsikt]

source = https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-022-03346-2

This study has 30 patients. It obviously can’t be used to determine the rate of ME/CFS among LC patients.

 

[ahimsa]

This study has 30 patients. It obviously can’t be used to determine the rate of ME/CFS among LC patients.

No, I realize that. There were several early studies. That's just the one I found.

I'm not good at this so I'll just stay out of the discussion for now.

 

[Nightsong]

From "Longterm course of neuropsychological symptoms and ME/CFS after SARS-CoV-2-infection: a prospective registry study" (Reuken, 2023):

A total of 1022 patients were included in the study, 411 of them had more than one visit. 95.5% of the patients reported a polysymptomatic disease. At the first visit 31.3% of the patients fulfilled ME/CFS criteria after a median time of 255 days post infection and and at the second visit after a median of 402 days, 19.4% still suffered from ME/CFS.

 

[Hutan]

There were at least three early studies that showed somewhere around 50% of Long Covid patients met the ME/CFS criteria. A quote from one of those studies:

"In our observational longitudinal PA-COVID Fatigue study of PCS [post-COVID-19 syndrome] patients with persistent moderate to severe fatigue and exertion intolerance for more than six months after mild to moderate COVID-19, we found that approximately 50% of patients fulfilled the diagnostic criteria of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), but many PCS patients not fulfilling these criteria were equally impaired"

source = https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-022-03346-2

Three of these studies are cited on the meaction website here (links in second paragraph):

https://www.meaction.net/long-covid-me-understanding-the-connection/

Are there newer studies that show different numbers?

I'm not good at this so I'll just stay out of the discussion for now.

You are good at this @ahimsa, please don't stay out of the discussion if you don't want to.

The problem with giving a definitive percentage is that the studies are quite a mess, with varying requirements and assumptions.

First the Long Covid cohort, often is highly selected (just hospitalised, just older people, just military people, just those who keep coming back with troublesome symptoms, just people with the particular problem of the clinic that they are attending).

Second, the definition and/or diagnosis of ME/CFS varies and often is problematic (e.g. self-reported, different diagnostic criteria). There was that recent study that suggests that doctors were handing out CFS diagnoses extremely liberally - something like 5% of the population in a very large health insurance database had been given a CFS diagnosis. I might have the details wrong, but the point is, unless people are actually looked at by a doctor who knows what ME/CFS looks like, we can't be sure of the diagnosis. And even then, with the informed doctor, there are still a lot of uncertainties. The commonly used questionnaire for determining if someone has PEM is flawed, I think.

Third, as @Nightsong's quote shows, it matters a lot when the assessment of percentages affected is made. In a lot of studies, the numbers of people meeting ME/CFS criteria reduces over those first two years.

The evidence base is nowhere near good enough to say that 50% of people with persisting symptoms after Covid-19 are likely to have ME/CFS, let alone to be training student doctors on that 'fact', and having them choose between 50% and other percentages.

 

[Sean]

Q_4 Increase or decrease activity levels based on symptoms (symptom-contingent pacing)

That’s a terrible description of pacing..

That was actually one of the few questions that I thought was ok.

@Hutan my exeperience coming from three years in the LC community, is that new patients need crystal clear instructions. If not, they are going to try and twist anything into ‘this is probably fine’ or ‘I can do just a bit more’ or ‘I can’t possibly give up X’. Or they are unable to see the logical consequences of a ‘rule’. I struggled with this myself.

Learning to pace is extremely difficult, because it means coming to terms with the severe limitations of your new life with a terrible illness. And you’re going to fight against that because you want to keep as much of your life as possible. And everyone around you are going to encourage you to do more. Or say ‘don’t you want to do this’ or ‘we have to do X because that’s how we’ve always done things’.

The new patients need someone to tell them and their family that avoiding PEM is the number one priority. Logic decides, and then you have to deal with the emotions that arise because of it - for everyone involved.

It is not a bad question, and is heading in the right direction.

But, as @Utsikt says, it still has quite a way to go to being safe and accurate.

 

[Arnie Pye]

The 14-year-old girl with dizziness, tachycardia and purple toes should be tested in the first instance for iron deficiency. It's very common in women and girls with or without Long Covid or ME/CFS, and it is very disabling. But in my experience it is so common that doctors are very blasé about it, and routinely disbelieve women and girls anyway.

I once read a Twitter thread (that I can no longer read because I refuse to open an account) in which the writer was complaining that her doctor didn't think her ferritin level of 6 (I can't remember the units) was important and wouldn't treat her. That got thousands of responses from women and girls who had had the same experience with levels under 20.

When my iron and ferritin were practically non-existent my heart rate frequently went up to 150 beats per minute and I suffered episodes of severe chest pain that made me think I was having a heart attack. Tachycardia and chest pain are known effects of severe iron deficiency - but are rarely mentioned in bumf about the condition online. When hospital doctors found out I wasn't having a heart attack their differential diagnosis was that I was drug-seeking and anxious. I ended up having to treat my iron deficiency myself and it took years because I absorb it very poorly.

 

[Jonathan Edwards]

I have no idea who is behind these questions but they are entirely inappropriate as a clinical teaching tool. They are largely make believe. Real medicine should keep well away from this sort of simplistic analysis. Everything seems to be focused on giving names or numbers to situations based checklists.

Taking a history in real life does not work like this. Either this has been written by people who are not actually physicians or by physicians who have no real understanding of how to get useful information from people about their illness.

All the garbage about MCAS and POTS should be removed.

 

[Hutan]

I have no idea who is behind these questions

https://www.meaction.net/2025/02/20/meactions-medical-flashcards-featured-by-cdc/

#MEAction is excited to announce that the Anki Flashcards we created about ME/CFS and infection-associated diseases have been recommended by CDC on its new ME/CFS page for medical students! Anki flashcards are a digital learning tool used by medical students to retain medical knowledge.

The deck was created for our #TeachMETreatME campaign with #MEAction Georgia volunteers, #MEAction staff and expert clinician reviewers, and features insightful and crucial information about infection-associated chronic conditions, including ME/CFS, Long COVID, POTS, hEDS, MCAS, and more!

It's very disappointing, it's a real own-goal. We've got to get advocates better informed.
Perhaps we can contact the CDC.

 

[Utsikt]

No, I realize that. There were several early studies. That's just the one I found.

I'm not good at this so I'll just stay out of the discussion for now.

Apologies for being dismissive. I mistakenly read your comment as being in favour of that study, and inappropriately reacted to that instead of being clear that I was trying to comment on MEA’s selection of sources.

 

[Utsikt]

From "Longterm course of neuropsychological symptoms and ME/CFS after SARS-CoV-2-infection: a prospective registry study" (Reuken, 2023):

Just adding this about selection for context:
«We analyzed a registry of all patients presenting in the out-patients clinic at a German university center.»

 

[Utsikt]

It is not a bad question, and is heading in the right direction.

But, as @Utsikt says, it still has quite a way to go to being safe and accurate.

I’m being very pedantic now, but I don’t see how it can be ‘not bad’ if it isn’t safe.
Any unsafe info is quite bad in my book.

 

[Hutan]

https://www.meaction.net/2025/02/20/meactions-medical-flashcards-featured-by-cdc/

There's a comment facility on that MEAction page.

 

[Sasha]

I have no idea who is behind these questions but they are entirely inappropriate as a clinical teaching tool. They are largely make believe. Real medicine should keep well away from this sort of simplistic analysis. Everything seems to be focused on giving names or numbers to situations based checklists.

Taking a history in real life does not work like this. Either this has been written by people who are not actually physicians or by physicians who have no real understanding of how to get useful information from people about their illness.

All the garbage about MCAS and POTS should be removed.

Apart from these flashcards, have you seen our charities/organisations/allies produce anything useful for medical education? If they haven't, what sort of stuff is useful in medical education (flashcards, anything else) that could potentially be produced on the forum, maybe as part of the factsheet project? I've no idea how medical education is done these days in universities and presumably med students would be lucky to get an hour on ME/CFS so maybe not much is needed.

 

[Jonathan Edwards]

If they haven't, what sort of stuff is useful in medical education

The plans for factsheets are already the right approach I think. Medical education should provide reliable background information from which students and trainees can learn to build their clinical skills. The modern trend to quiz-show questions and recipes is a disaster area. We shouldn't go near it.