Your doctor can learn to diagnose and treat ME/CFS while receiving a continuing medical education credit online through Mayo Clinic until 9/30/25

[Faith2007]

Here is the link to Mayo Clinic's article describing this https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

I found out about this through this year's #MEAction's #MillionsMissing campaign which has provided the template below that you can use to share information about this course with your doctor:
https://docs.google.com/document/d/15jJZ3-eHQq0pVsshfK-E0so2ucvrBWAzK8en82Xfnfo/edit

When I use the word treat, it's not the same as cure.

 

[Rufous McKinney]

When I use the word treat, it's not the same as cure.

the document is pretty good, its encouraging to see.

Agree, we can consider the term "treating" very loosely.

 

[Wishful]

The web page is the most sensible ME document I've seen yet.

One problem I spotted: "Thyroid Function testing" should be expanded to make it clear that it needs to be more than just measuring Tsh.

It may just be a coincidence, but I noticed that on the human body image, Myalgia was pointing at the front thigh muscles, which is where I feel ME-myalgia the most. I wonder whether that's the most common spot for PWME.

Last time I checked the criteria for ME, I felt like I managed to fit the criteria, but still really non-standard. This document makes me feel like I fit much better.

 

[Wishful]

One thing missing from the document: that treatments for ME is very individualistic, and what works for a few people has no effect on the majority, and makes some people worse. Doctors shouldn't read the list of treatments as "these are treatments that work for PWME" and then blame the patient if they don't help.

 

[Faith2007]

@Wishful I hear what you are saying. This is like a beginner's course for doctors. The last line in the conclusion discusses complex cases needing to be referrred to a ME/CFS specialty clinic. Completing this course will not make your doctor an ME/CFS specialist. That is a different category.

 

[Rufous McKinney]

Myalgia was pointing at the front thigh muscles,

very weak in that area, myself.

 

[Wishful]

The last line in the conclusion discusses complex cases needing to be referrred to a ME/CFS specialty clinic.

Do specialty clinics actually accomplish anything? I haven't heard anything to convince me of that. If the GP prescribes LDN based on this document and it has a negative effect, I wouldn't consider that a complex case; it's just that LDN only helps a small percentage of PWME, so a lack of improvement is typical. AFAIK, all the treatments only work for a small percentage of PWME, and I don't think even the world's top expert on ME is going to have a significantly better guess as to which treatments will or won't work on a specific patient. If there are a few treatments that are more likely to work on a specific subset, such as patients who have active EBV, that doesn't need travelling long distances to a specialist either; it could just be added to the document or to a web page containing the latest "this treatment has worked for several patients with this specific set of diagnostic results".

There are several lists of treatments for ME that people claimed to have worked for them. I wonder how many people have found a treatment that works for them from those lists.

I think the document is a major improvement over previous ones. I just think that clarifying that the listed treatments work only for a few patients rather than having a high chance of success for all patients. Even for a beginner's course, it should be made clear that this is a complex and confusing disease with no simple solution. It's a big difference from those common diseases that require only a few minutes of the doctor's time.

 

[Faith2007]

Do specialty clinics actually accomplish anything?

ME/CFS clinics, medical groups, or whatever you wish to call them, train their doctors in ME/CFS. I believe that can look different for each group. Some doctors have many years of experience treating ME/CFS patients, which helps. I have seen what I consider to be two very good specialists in ME/CFS. One worked for two different medical groups. These doctors know what to test for and have told me what type of treatment to seek if I can't get it from them. Even though I get treated by other doctors as well, I ultimately have to go back to my specialist since the other doctors have no knowledge of ME/CFS.

Holtorf Medical Group, where I go, uses a different range for testing, as well. Other doctors just look at my test and even if it the lowest possible or highest possible number within what they consider a normal testing range, do nothing. I have to show the testing to my ME/CFS specialist.

ME/CFS specialists were able to get me well enough to work 20 hours a week and still go to multiple doctor appointments for 4 1/2 years after I hadn't been able to work for years. Now I can't work at all again, after getting more than one virus, the worst being Covid. But if I wasn't still doing the treatments they recommend after the viruses made me worse, I would likely be living out of a recliner or possibly even my bed. Without their testing and diagnoses I wouldn't have been able to pursue SSDI, though I'm still waiting to receive a verdict from the administrative law judge. So having access to a good ME/CFS specialist makes a huge difference in quality of life to someone like me.

 

[Wishful]

One other thing I noticed about the clinic's statement: they declare that ME is a chronic neurologic disease. While I agree that's the most likely category for ME, I don't think there's adequate evidence yet to rule out other possibilities.