Friday, April 23, 2021

New ME/CFS Testing & Treatment Guidelines

Great news! The U.S. ME/CFS Clinician Coalition has published two more excellent documents to provide guidance to doctors diagnosing and treating ME/CFS patients. Here are some details and links to both the new and older documents:

Who Are They?

The U.S. ME/CFS Clinician Coalition is a group of 21 top experts in myalgic encephalomyelitis and chronic fatigue syndrome in the U.S. Individually, these doctors have treated thousands of patients with ME/CFS using the best and latest research (and often participating in research and running studies themselves) for dozens of years. Together, they were working collectively to exchange information and stay up-to-date even before this group was officially formed in 2018. Some of them served on the committee to develop new diagnostic criteria. You can read more about the group at their website.

Some, but not all, of the doctors in the coalition still see patients. They are included in my page on Finding a Doctor, which also includes lists of top ME/CFS experts around the world, second-tier doctors who treat certain aspects of ME/CFS, links to doctor databases, and tips on finding a local primary care doctor who can help you.

What Are the New Guidelines Just Published?

The Clinician Coalition just this week released two new documents to help doctors trying to diagnose and treat ME/CFS patients. These are documents that YOU can share with your own doctor:

Testing Recommendations for Suspected ME/CFS - this comprehensive list not only helps doctors to diagnose ME/CFS and rule out other possible causes, but it also provides tests to help doctors better characterize this particular patient's ME/CFS, like which kinds of infections are present and whether they have Orthostatic Intolerance (OI).

ME/CFS Treatment Recommendations - this 9-page document includes a fairly complete list, organized by aspects of the disease, of medications, supplements, and other treatment approaches. They've included proven treatments that have helped many patients, as well as options for the patients who might not respond typically. Note that while the document does mention pacing toward the end, it does NOT mention Graded Exercise Therapy or Cognitive Behavorial Therapy!

What Else Is Available from the Clinician Coalition?

So much!! Their website has a treasure trove of information for patients and doctors. Check out their Resources page for reports and documents from them and from other sources, including more testing and treatment advice, latest reports on ME/CFS, more on common aspects/comorbidities like Orthostatic Intolerance and Ehlers-Danlos Syndrome, disability info, and more.

They also published a statement in October 2020, Post-COVID "Long Haulers" and ME/CFS, that explains how most cases of COVID long-haulers probably have ME/CFS and the history behind various infections, including SARS infections like COVID, triggering ME/CFS.


All of this is excellent, scientifically-based information that you can share with your doctor(s) to help them better understand, diagnose, and treat ME/CFS (including cases of "long COVID"). Our medical professionals are sadly lacking in training and up-to-date information on ME/CFS, so share this freely!


Anne said...

Thank you so much for posting this information Sue, most informative. Sadly my doctors here in the UK (both state and private) only offer sympathy, no treatment. I asked about LDN (low dose Naltrexone) last year and was told 'we don't prescribe any medication for CFS/ME in here in the UK'.


Sue Jackson said...

Hi, Anne -

Sorry to hear your experiences have been so discouraging so far. But you CAN get real ME/CFS medical treatments in the UK - you may just need to go outside the NHS for some of them. LDN is just one of many, many treatments available - some you can try yourself, some require the help of a doctor, and a few do require an ME/CFS specialist (again, none in the NHS but there are some outside of it).

This info will help you find a doctor - there is advice here plus lists of specialists (including the UK):

And this is a summary of the treatments that have worked best for my son and I:

One thing I know you CAN do within the UK's NHS is to diagnose and treat OI. Ask your GP to refer you to a cardiologist. If you get any resistance, try some at-home OI measurements to get some initial data to show your doctor. It's all explained here:

Don't give up! LOTS of people with ME/CFS in the UK have been able to get appropriate treatments - you just need patience and persistence.

Good luck!