US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

omf sent this out:

vvv
NEW GUIDELINES FOR DIAGNOSING AND TREATING ME/CFS
A resource for clinicians and patients.

The U.S. ME/CFS Clinician Coalition, a group of U.S. ME/CFS experts, has authored a handout on the basics of diagnosis and management of ME/CFS.

This handout is being made available for the medical community to help them better understand how to recognize ME/CFS and how to appropriately care for patients. Patients may also find it useful to provide this handout to their own providers.

ME/CFS experts in the U.S. formed the ME/CFS Clinician Coalition in March 2018 with the goals of advancing the clinical care of people with ME/CFS and providing clinical insights to researchers in the field. More information on the 2019 summit is available here. Linda Tannenbaum actively participated in these coalition meetings.

The handout on diagnosis and management provides a link for medical providers who are interested in getting more information on the coalition.
^^^

a (non-tracking non-redirected-google-drive/pdf) url seems to be https://www.omf.ngo/2019/09/01/new-guidelines-for-diagnosing-and-treating-me-cfs .

 

https://twitter.com/user/status/1168277427564503041

 

Despite not being in the US, this is the sort of handout I'd take to my doctor. Clear, short, and to the point.

 

Direct link to the document is

Code:

https://drive.google.com/file/d/1SG7hlJTCSDrDHqvioPMq-cX-rgRKXjfk/view

For me, the focus is still too much on fatigue, and that last part is not the experience of many of us here. Rest may not eliminate fatigue, but it can certainly alleviate it - if it doesn't then I'd argue the patient isn't resting enough (or for the very severe they can't rest sufficiently to alleviate it).

ETA: Cleaned the link to the document.

 

My main criticism would be that the 4 'core symptoms' are inadequate.

In it's description of PEM it says 'typically delayed and prolonged exacerbation of symptoms' but apart from fatigue and sleep disturbance' it gives no indication of what the 'symptoms' are.

Prolonged headaches, sore throats, noise and light intolerance and lack of balance/dizziness (which may or may not be part of orthostatic intolerance) should feature somewhere; or even just mentioning 'flu-like symptoms' would be more accurate. I hate to say it but, it wasn't nicknamed 'Yuppie flu' for nothing.

 

You often see this wording in research papers. It’s from the Fukuda et al. criteria. However, the wording was actually “not substantially alleviated by rest”.

 

Thanks for spotting that, I've edited the link in my post as well.

 

To facilitate sharing online:

https://twitter.com/user/status/1168505625820766213

 

To facilitate sharing online:
https://twitter.com/user/status/1168506697943527424

 

To facilitate sharing online:
https://twitter.com/user/status/1168508293100244993

 

To facilitate sharing online:
https://twitter.com/user/status/1168509263263739904

 

The IOM criteria lists the "substantially impaired" as follows - it does have "not substantially alleviated"

"A substantial reduction or impairment in the ability to engage in pre- illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest"​

 

To facilitate sharing online:
https://twitter.com/user/status/1168510139055398913

 

Looks pretty decent. The best part is that it's short and to the point. 30+ page handbooks are definitely not being read by physicians. This one is 5 pages (6 minus the cover).

One remarkable thing is that this is basically a perfect negative of the psychosocial model.

One model takes patient experience and objective reality into account. The other dismisses and contradicts patient experience and has been strongly and consistently objected to for decades on the basis that it does not represent reality and has been demonstrably disastrous in outcome.

Without knowing any of the details, how much sense does it make that model #2 is the one used in practice and aggressively defended and promoted despite delivering exactly zero progress in about 2 decades?

It would make an interesting test, removing all identifying details and asking for input from experts.

 

Many thanks to all the people involved !!! I find it very helpful.

I already gave it to one of my doctors

 

This.

 

It's going to take a while to overturn decades of disinformation.

I think that if it emphasized too much on this, it's likely that the reaction would be for many to dig their heels in and reject all of it. It's mostly a matter of opinion and sadly the same rules that dominate in politics also apply here because of this. Contradicting information is often more likely to be met with even stronger beliefs in the wrong direction. Medical professionals are no better at this when it comes to ambiguity.

It takes gotcha! moments to do a full 180. Slow reversals based on mounting evidence simply don't provide this as long as the garbage research dominating the field stands. Even with the overwhelming and consistent evidence that GET is clearly harmful, the advice is still just as defended today as it ever was. That's why disinformation is so damaging, it has huge inertia even beyond its initial push.

It's all stupid but we are dealing with aggressive malicious stupidity, so it's a steep uphill (both ways) struggle.

 

Which is why it's important to speak out when it's seen, even when it's coming from a group who are obviously working to improve the situation. I'm grateful for their efforts, but without any further insight into why they chose the message that they have put out, I can only take it at face value, which is that I think they focus too much still on fatigue. I'd highlight this to them directly but there doesn't seem to be a central point of contact, perhaps I'll just need to collect their individual emails and send an email to all.

A further thought I've had. While it's understandable to focus on trying to get across how disabling this condition can be, and obviously there is a history of neglecting to consider those who are at the severe end of the scale, but is there not also a risk of leaving those at the "very mild" end of the spectrum.

This section, with my comment in square brackets, raises issues for me.

So I would question how "moderate to severe" should be defined. What is moderate to severe PEM? Going by this 'mild PEM' would be both a hallmark of ME/CFS but, at the same time, not enough to get you diagnosed with ME/CFS. And the strong possibility that someone mild could be in constant PEM does not seem to be recognised. Given that most people that clinicians are likely to see will be, initially, mild, this seems be quite problematic to me.

 

Yes I found myself pondering this, and whether in some way a person with mild ME might nonetheless present with 'moderate' core illness features. Even if by some quirk of meaning it did include those mildly affected, it would still send out the wrong message. And for all we know they might be looking to exclude those at the mild end!