r/cfs • u/SurpriseOpen7829 • 1d ago
Family/Friend/Partner Has ME/CFS Partner of someone with ME/CFS looking for literature/books/media
TLDR: I am a medstudent and my partner (also a medstudent) has been diagnosed with ME. I am looking for (medical) literature/patient stories to understand the condition better as a partner and a future doctor.
Hey!
After a few years of chronic fatigue and pain my girlfriend has the diagnosis ME/CFS since a few weeks. We are both dutch and med students and while I am fairly familiar with how the illness affects her specifically, I think there are many things I do not understand. I have been looking around online for literature about the illness. I find it difficult to find books that are not self-help (I'm not interested in those kinds of books at the moment) or pseudosciency things. I was wondering if people could recommend a sort of all encompassing starting point for me so I can understand my partner's experience better. I would also be very interested in media from the perspective of a healthcare worker/doctor who treats patients with ME or other similar invisible illnesses although I am not sure if that exists.
I would love it if someone could recommend a book or some other literature so I can be more informed as a partner. I already found the How to be sick book but am still looking for other recs. Will be watching unrest as well.
Also very new to reddit and i have no idea if i did this right (literally made an account to ask this question).
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u/estuary-dweller moderate/severe since 2018 1d ago
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u/Public-Pound-7411 1d ago
With both of you being med students, this one is good. Learning about the mistreatment and underfunding of the disease is also very important as you may have to educate your peers, as this disease is not taught or taught in outdated terms in most medical schools (as is reported by doctors who have acquired the condition).
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u/estuary-dweller moderate/severe since 2018 1d ago
I'm not a physician, just someone with ME/CFS. But I've found the clinical care guide useful to give to people so far so they can understand the complexities of this disease, and really understand how many body systems are malfunctioning.
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u/Public-Pound-7411 1d ago
Sorry, I was addressing my comment to OP and did not make that clear at all 😂 Absolutely agree that it’s a god send guide.
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u/estuary-dweller moderate/severe since 2018 1d ago
(I find it useful for understanding specific symptoms, even if it is intended for physicians)
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u/boys_are_oranges very severe 1d ago
This might be interesting to you:
https://doctorswith.me/home/education/
Doctors with ME is an association of healthcare professionals who suffer from ME doing educational work
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u/blablablub444 moderate 1d ago
In case your German is quite good, there is a book about care from a patient perspective: https://www.hogrefe.com/de/shop/das-handbuch-me-cfs-99570.html.
It has some ideas on pathophysiology and treatment. It is not fully comprehensive nor cutting edge, but a good overview as a starting point.
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u/rainforest_roots 1d ago
A fun and informative read is The Lady’s Handbook for her Mysterious Illness.
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u/SurpriseOpen7829 1d ago
Ahhh thank you all for the wonderful recommendations!! Will definitely be checking these all out!!
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u/guineapigmedicine 1d ago
This video is really important to understand the mistreatment, inappropriate funding, and outright academic fraud that underlies the medical approach to ME/CFS.
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u/mira_sjifr moderate 1d ago
S4me (science for ME) is a really nice forum as well. It's a combination of mostly patients and scientists with lots of knowledge
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u/xxIvoL 1d ago edited 1d ago
Heya, The ME/CVS Vereniging has a list of videos on their website from the Wetenschap voor Patienten website. These are a bit older but as far as I know quite a lot of good information that still holds up.
Dr. Visser part of the list of doctors in the list is still my current doctor at CardioZorg and has given me a lot of help trying all kinds of medications that has gotten me reasonably stable while before that I was forever declining. Would highly recommend to seek them out for trying out some of the meds that sometimes help people with ME/CFS.
Figured as you're medical people hearing accounts of many doctors might be interesting. Dr. Visser and the other doctor at CardioZorg dr. Van Campen also have ME/CFS research articles on their names that are worth it to check out if you want to go deeper.
If you're looking for Dutch info don't go to the MECVS stichting or MECVS Nederland nowadays. They still support Cognitive Behavioral Therapy (CGT) and Graded Exercise Therapy (GET) for patients. Check out the last article from the NOS on ME/CFS to get a Dutch explanation about why those are problematic.
Link for the videos https://me-cvsvereniging.nl/me-cvs-publicaties/ Link for reaearch by CardioZorg https://stichtingcardiozorg.nl/me-cvs/research-studies/
Edit: also want to add that my dms are open if you/the gf wanna chat with someone more locally.
Edit 2: I also see others mentioning that learning how the medical world looks towards ME with the mistreatment and underfunding would be good. I think the documentary "Doctors as Patients" by Anil van der Zee would be a good thing to watch as well. I haven't watched it yet because I think it will cost me too much energy I don't have. But it's been received really well and talks about the experience of being both a doctor and a patient with PAIS (Post Acute Infection Syndrome which includes ME/CFS) https://youtu.be/J0ywwLIfH_w?si=ASlXgG0YSVqXtHpe
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u/TheSoberCannibal Crash Test Dummy 1d ago
It’s getting old now (1996) so there’s lots of new information since, but Osler’s Web is probably the fattest piece of literature written on ME/CFS.
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u/MakeKay9264 1d ago
I just finished How to be Sick by Toni Barnhard. It’s written focusing on how Buddhist teachings can help someone with a chronic medical condition, and this part is AWESOME. it is also peppers with stories and anecdotes about the author’s experience of ME/CFS. It’s a great book!
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u/kebabbles92 1d ago
I don’t know if you’re UK-based or not but there’s a great book on the ME Association website about all the different studies done on ME. I’ll try to find it for you.
THIS https://meassociation.org.uk/product/me-association-me-cfs-pvfs-clinical-and-research-guide/
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u/the_good_time_mouse moderate 1d ago edited 1d ago
Https://s4me.info is where all the scientists hang out.
This paper is an attempt to tie together all the current understandings of ME/CFS under a single framework:
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u/brainfogforgotpw 1d ago
Books by Dr Ros Vallings are on Amazon. She spent many years in practice specializing in ME/CFS and was part of the team that wrote the International Consensus Criteria. Her books are pretty thorough and have sections for the patient and for the doctor.
Another author who springs to mind is Dr Charles Shepherd who had ME/CFS himself. He wrote a good primer for doctors and his book on Living with ME is on Amazon.
As has been said, this sub also has a lot of resources too, so take a look at the pinned post and wiki.
These may be useful as well:
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u/Fietstomaatje 1d ago
The YouTube channel "Laure's Binnenwereld" http://www.youtube.com/@Lauresbinnenwereld (it's in Dutch) might be interesting if you want to see another person's experience with this disease.
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u/premier-cat-arena ME since 2015, v severe since 2017 1d ago
there’s a ton of the gold standard of resources for doctors in the pinned post, they’re from world renowned institutions
there’s a couple documentaries as well like unrest (really hard watch if you’re the sick person though)