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Is there a good and credible sounding medical-based summary of ME/CFS for people who've not heard of it?

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Guwop2

Senior Member
Messages
243
A relative of mine has offered to help me work with a doctor (i.e financially support medical stuff). They have not heard of ME/CFS and neither had their functional medical medical doctor. I would like to send them 1 or 2 key pieces outlining the illness from a medical perspective rather than me rattling off terms like 'PEM', which makes me feel like a fraud because of how makeshift the terms we use on here sound. Is there something I can forward them? I need to temper their optimism about curing the illness and make them aware of the reality of the disease they are dealing with.
 
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andyguitar

Senior Member
Messages
6,631
Location
South east England
Guwop2 said:
They have not heard of ME/CFS and neither had their functional medical medical doctor.
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Oh dear!
Guwop2 said:
I need to temper their optimism about curing the illness and make them aware of the reality of the disease they are dealing with.
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Hmm...how about finding a doc that has experience with treating me/cfs as a starting point?
 
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Guwop2

Senior Member
Messages
243
andyguitar said:
Oh dear!

Hmm...how about finding a doc that has experience with treating me/cfs as a starting point?
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indeed oh dear, however maybe down the line seeing an ME specialist would be possible, though as a starting point my aunt has setup a meeting with her doc who uses cellcore.com products (some of whcih have been used by people here). For now though it would be really useful to be able to send them material that explains the illness. I believe my aunt is willing to follow my lead with this, but it would make things smoother for me if I can point her to some reading material that is uniquivocal about the illness, from her point of view she had just heard ive been ill for 10 years with an illness she has also not heard of, so i need to play the game a little at first.
 
Faith2007

Faith2007

Senior Member
Messages
118
Location
Montana, USA
This is one of the links PR uses in their introduction, and the first sentence would work, though after it gets even more specific: https://mecfscliniciancoalition.org/

I understand that you aren't in a financial position to see a ME/CFS doctor. The issue is, this doctor you are seeing may not even know what to test for, which will dictate your treatment, including medications and supplements. There is a basic course for doctors to learn about ME/CFS that I posted about, which is short. Otherwise I recommend using a book with your doctor, like From Fatigued to Fantastic by Dr. Jacob Teitelbaum, a former medical director of The Fibromyalgia and Fatigue Centers. That book discusses testing and treatment of ME/CFS.
 
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Guwop2

Senior Member
Messages
243
Faith2007 said:
This is one of the links PR uses in their introduction, and the first sentence would work, though after it gets even more specific: https://mecfscliniciancoalition.org/

I understand that you aren't in a financial position to see a ME/CFS doctor. The issue is, this doctor you are seeing may not even know what to test for, which will dictate your treatment, including medications and supplements. There is a basic course for doctors to learn about ME/CFS that I posted about, which is short. Otherwise I recommend using a book with your doctor, like From Fatigued to Fantastic by Dr. Jacob Teitelbaum, a former medical director of The Fibromyalgia and Fatigue Centers. That book discusses testing and treatment of ME/CFS.
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really great advice and link here. thank you very much
 
Mary

Mary

Moderator Resource
Messages
17,448
Location
Southern California
And don't forget the CDC: https://www.cdc.gov/me-cfs/index.html

if you scroll down the page, there are several sections you can click on, and one of them is called Information for Health Care Providers which is pretty comprehensive and has its own set of links.

Also, the Mayo Clinic now has a very comprehensive review of ME/CFS for clinicians and is offering a continuing education course for doctors on ME/CFS: https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

This is pretty amazing because until relatively recently all Mayo did was suggest exercise and counseling. They've done a 180.

Thanks to @Faith2007 for bringing this (Mayo Clinic) to our attention!

ETA: btw, @Guwop2 - I don't think you'll get much more credible than the CDC and Mayo Clinic! though the other links above look very good as well -

And it's important to use the full term, ME/CFS, even though it's a mouthful. Many believe that calling this devastating illness simply "CFS" is a major reason so little money has been allocated for research. Everyone gets tired, don't they? And as you can see, ME/CFS is what the CDC and Mayo and any other reputable research entity will use.
 
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Artemisia

Artemisia

Senior Member
Messages
270
Guwop2 said:
I should clarify that they werent familar with the term 'M.E', but they knew about CFS. I prefer to use 'M.E' because it sounds more legitimate, but when i clarified it with 'CFS' they knew
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Problem is you don't know whether they really know about CFS.

Because I've met ppl / practitioners who claim to "know about CFS" even claim they "had it too" but with time it becomes clear they don't and didn't. Because they inevitably tell me to exert, and then are surprised when I cannot exert.

I also prefer to use ME and then do the capitulation and use CFS so I get some recognition. Then they start using "chronic fatigue" ---> nails on chalkboard.

anyway good luck! hope they will help you. :)
 
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