U.S. ME/CFS Clinician Coalition launches website

Pyrrhus

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https://mecfscliniciancoalition.org/

Introducing the US ME/CFS Clinician Coalition Website September 16, 2020

The US ME/CFS Clinician Coalition has launched a new website to provide clinicians with high quality information on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The site can be accessed at MECFSClinicianCoalition.org

A significant proportion of people with ME/CFS have not been properly diagnosed and have struggled to access appropriate clinical care. Many medical providers have reported uncertainty about how to diagnose and care for ME/CFS patients. In 2015, the National Academy of Medicine (NAM) established new clinical criteria focused on the core features of the disease to improve diagnosis. While there are not yet specific diagnostic biomarkers or evidence-based treatment guidelines for ME/CFS, there are many actions a medical provider can take to reduce symptom burden and improve quality of life for people with ME/CFS.

The goal of this website is to help medical providers deliver better care. The website provides information about ME/CFS and the best clinical diagnosis, treatment, and management practices used by experts in the field. It also provides links to information on key comorbidities, disability, work and school accommodations. There are links to various medical education courses, including CMEs, plus key reports and research efforts. Additional information will be added as it becomes available.

The US ME/CFS Clinician Coalition is a group of US ME/CFS expert clinicians who have collectively spent hundreds of years treating many thousands of ME/CFS patients. In addition to their clinical practices, Coalition members are active in ME/CFS research. They have authored primers on clinical management, developed medical education courses, and served on the NAM panel that authored the 2015 report on ME/CFS. You can learn more about the Coalition and contact them through their website.

If you are a medical provider, please visit the Coalition website. You will find expert guidance to help you deliver the most informed and effective care.

The US ME/CFS Clinician Coalition
 

PatJ

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Am taggging in @PatJ , cause I know this will be useful to a wider audience of newcomers thru his beautifully organized, extremely comprehensive list of links to everything ME ....
Thanks for tagging me. I'll add the link to my list.

It's nice to see another resource for patients to pass along to their doctors.
 

Pyrrhus

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Saving this. Thank you, @Pyrrhus !
I've never been diagnosed. When I brought it up with my previous doctor, he said, "Don't let that become a mindset." So I shut my mouth and haven't wanted to bring it up with my current doctor. I hope he will look at the website.
 

Mary

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The US ME/CFS Clinician Coalition has published a consensus diagnosis and treatment recommendations in the Mayo Clinic Proceedings journal:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management (2021)
https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext


The recommendations are talked about in the 6-minute video:
Wow - a few years ago we were literally begging the Mayo Clinic to change its website blurb re ME/CFS, which had the usual blather about GET and CBT, etc. - a complete turnaround!!! Whoops - I just looked at their website, it hasn't changed!
Many people with chronic fatigue syndrome benefit from:

  • Counseling. Talking with a counselor can help build coping skills to deal with chronic illness, address limitations at work or school, and improve family dynamics. It can also be helpful for managing depression.
  • Addressing sleep problems. Sleep deprivation can make other symptoms more difficult to deal with. Your doctor might suggest avoiding caffeine or changing your bedtime routine. Sleep apnea can be treated by using a machine that delivers air pressure through a mask while you sleep.
  • Exercise. Aggressive exercise regimens often lead to worsened symptoms, but maintaining activities that are tolerated is important to prevent deconditioning. Exercise regimens that start at a very low intensity and increase very gradually over time may be helpful in improving long-term function.
Chronic fatigue syndrome - Diagnosis and treatment - Mayo Clinic

I wonder if the ME/CFS Clinic Coalition could urge Mayo to update and correct their website? Mayo never listened to the patients.

ETA: I just sent an email to the journal of Mayo Clinic Proceedings, urging them to update their website in accordance with the article they published.
 
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