Wednesday, July 21, 2021

ME/CFS State of the Science: Perfect for Sharing with Doctors!

[NOTE: Please take a moment to endorse me! I've been nominated for 4 WEGO Health Awards.]

In June, two top ME/CFS researchers and doctors, Dr. Ian Lipkin (renowned Infectious Disease researcher) and Dr. Anthony Komaroff (long-time ME/CFS clinician) published an excellent and much-needed article in the the medical journal Trends in Molecular Medicine on Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome. The journal article covers the state of ME/CFS research at this time when "long COVID" (which is often ME/CFS) is rapidly increasing our numbers. It also addresses how the research and science of each condition can help the other.

You can read an excellent, easy-to-understand summary of the journal article, ME/CFS Research: State of the Art, State of the Science, here at the link at ME/CFS Center for Solutions' (at Columbia University) website. That summary article includes a link to the journal article.

This summary article, with the link to more detailed scientific references, is a perfect brief document to print and share with doctors and other medical professionals who either want to know more about ME/CFS or who clearly have misconceptions about the scientific basis for the disease. I've printed copies of both for our functional medicine specialist, a brilliant RN who knew nothing about ME/CFS before my son became her patient but is eager to learn.

Another excellent source of information for doctors that I've mentioned here before is the website for the U.S. ME/CFS Clinician Coalition. This is a group of about 20 of the top ME/CFS experts in the nation who've been treating patients with ME/CFS for years (sometimes, decades). On this website, they have compiled their vast knowledge and experience to help other doctors, with a huge array of resources they either reference or have written. These include official reports on ME/CFS, as well as their own guidance on diagnosing and treating the disease. This does not include debunked "treatments" like CBT and GET but a long list of real medical treatments that they have used for their own patients that any doctor can try.

So, if you have a doctor who doesn't understand ME/CFS, doesn't "believe in" ME/CFS, or is compassionate but thinks there are no treatments available, start sharing some of these excellent resources with him or her today! (And if you're doctor isn't interested in learning, find a new one).

This kind of broad communication of the latest in ME/CFS research is exactly what we need to begin bringing the medical community up to speed on the scientific basis of ME/CFS and how to treat it.


Windgin said...

Thanks for posting this information. I’m going to share this information with my PCP to see if he takes interest! I just had lab work returned which indicated an autoimmune condition was present and he was suggesting a rheumatologist.
I have a great ME/CFS doc in CT so I don’t have to worry or hit my head against a brick wall if my PCP doesn’t read the article. I also now have a Lyme doc which I’m confident with, even if other docs say I don’t have Tic infections. I know you know, what I am referring to. I’m really grateful for the Lyme and ME/CFS docs but wish my PCP and the family practice groups near me would get on board. I live near cities in CT, not out in the country. Boston and New York have big players in ME/CFS we really should have more physicians who believe in this illness.

Sue Jackson said...

Windgin -

Sounds like a good plan!

Great that you have both an ME/CFS specialist and a Lyme specialist - yes, I know what you mean!! I've never heard of an ME/CFS specialist in CT - I thought Dr. Levine in NYC was the only one in the East (other than Klimas' clinics in FL), and she's so overloaded now. Do you mind telling me his or her name and location? You can send me an e-mail if you like at jacksonde at comcast dot net.

Good luck with the educational materials! I hope it helps!