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

What’s FOSS?

 

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.

 

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.

 

@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

 

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?

 

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.

 

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

 

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.

 

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.

 

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.

 

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.»

 

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.

 

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.

 

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.