Mayo Clinic Proceedings: "Concise Review, Diagnosis and Management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome"

[Dakota15]

Sharing the recently published Mayo Clinic Proceedings review of ME/CFS (October 2023). Specifically called the 'Concise Review, Diagnosis and Management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome'.

It was authored by 3 MDs from Mayo Clinic and Jaime Seltzer from #MEAction: https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

This may have already been shared, but sharing here if not. It has to be pretty heartening to see Mayo Clinic become, from the outside, a positive agent for change in this ME/CFS field.

Especially for those that have been in this ME advocacy area for a long time, I’m sure seeing Mayo affiliated with moving ME clinical care & knowledge forward has to be a welcome sight. Thanks to all involved.

 

[sunshine44]

Thank you for sharing this.

 

[Judee]

Only was able to read down a little bit but sounds encouraging.

 

[BrightCandle]

This is better than the NICE recommendations because it goes beyond just diagnosis and actually includes a few potential treatments to try on a variety of the symptoms and at no point does it suggest exercise at all. The closest it comes is vestibular training, I don't recommend that at all for ME/CFS as this is what caused my first big crash but I doubt many ME/CFS patients know this (its highly stimulating to the brain). Probably some of the better guidance I have seen with only that one glaring obvious problem.

 

[Dakota15]

Sharing from Jaime Seltzer, one of the co-authors from #MEAction.

https://twitter.com/exceedherg.../status/1711197702564856010

Per Jaime, "It’s in the top <1% most shared of all Mayo Clinic publications. It’s the most shared paper amongst its contemporaries at Mayo Clinic Proceedings. It’s in the top 0.2% most shared research products of all time. It’s been live less than a week."

 

[sunshine44]

Sharing from Jaime Seltzer, one of the co-authors from #MEAction.

https://twitter.com/exceedherg.../status/1711197702564856010

Per Jaime, "It’s in the top <1% most shared of all Mayo Clinic publications. It’s the most shared paper amongst its contemporaries at Mayo Clinic Proceedings. It’s in the top 0.2% most shared research products of all time. It’s been live less than a week."

Wow, I’ve been thinking about this paper lots past day. I shared it with my volunteer nurse who doesn’t have high thoughts on Mayo with me/cfs/Lyme and she was rather surprised and impressed by their change in and acknowledgment of certain things.

I still know people who have been massively hurt by Mayo Clinic in past with this illness but still feels this paper is a step forward.

How sad that we really are just still asking for basic acknowledgment from large medical institutions…ya know?

 

[lenora]

@sunshine44, your nurse's reaction is the exact same as mine. For years people went to the Mayo and were essentially told it was all in their heads, plus more exercise was needed.

I used to cringe at someone going to the Mayo. Perhaps doctors stopped referring their patients, but the attitude there has definitely changed.....as it needed to.

There are many excellent clinics around. True, they may not be on your doorstep, so perhaps competition helped. That's good. Yours, Lenora

 

[Atlas]

It does seem like a good starting point for clinicians at least...

 

[wabi-sabi]

I'm not sure that the journal reflects practice or philosophy at the clinic. It's certainly not an admission of guilt or wrongdoing by the Mayo towards us. Their webpage certainly hasn't been changed to reflect current knowledge.

 

[wabi-sabi]

If you take a look at their fibro and CFS clinic page, it reads the same as what they were doing when I went in 2018. There's no acknowledgment that fibro and ME/CFS need different management in regard to exercise and the implication that they will try to take away pain meds from people with fibro. Moreover, there's no acknowledgement that either of these are organic illnesses, rather than just stress and burnout.

Link here: https://www.mayoclinic.org/departme...atigue-clinic-minnesota/overview/ovc-20485870

I don't think I need to "develop the confidence to change" or "improve self-awareness" as their clinic thinks it will give me.

 

[Osaca]

Sharing from Jaime Seltzer, one of the co-authors from #MEAction.

https://twitter.com/exceedherg.../status/1711197702564856010

Per Jaime, "It’s in the top <1% most shared of all Mayo Clinic publications. It’s the most shared paper amongst its contemporaries at Mayo Clinic Proceedings. It’s in the top 0.2% most shared research products of all time. It’s been live less than a week."

Thanks for sharing @Dakota15 . Are these tracking insights publicly available (PlumX Metrics doesn't have such data AFAIK)?

 

[Dakota15]

@Osaca You'd have to ask Jaime

 

[Rufous McKinney]

I find it disappointing that the entire traditional chinese medicine protocol is ignored.

So many opportunities to reduce symptoms and feel better, are entirely ignored because this is only one form of medicine.

 

[Judee]

If you take a look at their fibro and CFS clinic page, it reads the same as what they were doing when I went in 2018. There's no acknowledgment that fibro and ME/CFS need different management in regard to exercise and the implication that they will try to take away pain meds from people with fibro. Moreover, there's no acknowledgement that either of these are organic illnesses, rather than just stress and burnout.

Rats.

 

[sunshine44]

I find it disappointing that the entire traditional chinese medicine protocol is ignored.

So many opportunities to reduce symptoms and feel better, are entirely ignored because this is only one form of medicine.

Absolutely concur.
I mean, it’s pretty pathetic we are literally just begging for existence still and to not be hurt/killed. We’ve barely even moved forward from that on a medical paradigm.

 

[Rufous McKinney]

I don't think I need to "develop the confidence to change" or "improve self-awareness" as their clinic thinks it will give me.

they acknowledge fibromyalgia can cause debilitating pain, then describe a set of bogus management goals to correct your mistaken perspective.


totally insulting.

 

[wabi-sabi]

they acknowledge fibromyalgia can cause debilitating pain, then describe a set of bogus management goals to correct your mistaken perspective.


totally insulting.

Exactly.

It's a good article. However, I think it's quite telling that the Mayo doesn't seem to be following their own advice.

I really wish my brain worked well enough for me to write a book about it all.

 

[sunshine44]

Exactly.

It's a good article. However, I think it's quite telling that the Mayo doesn't seem to be following their own advice.

I really wish my brain worked well enough for me to write a book about it all.

Such a good point 😞