USA - Mayo clinic

This thread has been formed by merging several threads about the Mayo clinic and it's approach to treating ME/CFS

Supposed treatments for ME CFS - plus overview by Mayo clinic

https://www.drugs.com/condition/chronic-fatigue-syndrome-cfs.html


Content supplied by Mayo clinic

https://www.drugs.com/mcd/chronic-fatigue-syndrome
"
Therapy
The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines cognitive training with a gentle exercise program.

• Cognitive training. Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically.
• Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen."

"
Coping and support
The experience of chronic fatigue syndrome varies from person to person. Emotional support and counseling may help you and your loved ones deal with the uncertainties and restrictions of this disorder.

You may find it therapeutic to join a support group and meet other people with chronic fatigue syndrome. Support groups aren't for everyone, and you may find that a support group adds to your stress rather than relieves it. Experiment and use your own judgment to determine what's best for you."

 

"Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen." ??? What now? An allergy-like "hypersensitivity to exercise"? That's one I haven't heard before. If only it was that simple, we'd all be cured now!

 

Did pixies visit this person in the night and whisper this wisdom into their ear while they were sleeping? Where the hell has this shit come from?

Just so sick of people hurting patients with this ignorant crap.

 

Yep, seems the Mayo Clinic site has been hacked by faeries.

I had been under the impression that the Mayo's own website was okay but now I realise there's a second tab - Diagnosis & treatment — where this stuff lurks:

https://www.mayoclinic.org/diseases...gue-syndrome/diagnosis-treatment/drc-20360510

 

Oo, goodie. Also just noticed that one of the things "Your doctor must rule out" before diagnosing CFS is ....



Nice to know ME/CFS isn't a medical problem. I'm feeling better already.

 

The page is indeed copied (probably automatically) from Mayo: https://www.mayoclinic.org/diseases...gue-syndrome/diagnosis-treatment/drc-20360510

I've emailed them in the past with no progress, so trying a more public tweet:
https://twitter.com/user/status/934030757873508362

 

This website http://www.medbroadcast.com/condition/getcondition/myalgic-encephalomyelitischronic-fatigue-syndrome
which claims
"MediResource Inc. - MediResource reaches millions of Canadians each year."
"MediResource Inc. is the only Canadian health information provider to be accredited by URAC (www.urac.org). URAC is an independent body whose accreditation and auditing program validates organizations’ commitment to rigorous quality and accountability."

also says:
"Two-thirds or more of people who have CFS meet existing psychiatric criteria for anxiety disorders, depression, or dysthymia (mild, long-term depression), but whether these issues are the cause or the result of CSF remains unclear."
"Cognitive behavioural therapy and exercise (starting slow and increasing over time) appear to produce the most benefit."

 

Yes, absolutely. I was going to say the same in my earlier post but in much worse language, ha ha. When I became ill, I was working at a physically demanding job involving hauling computer kit from site to site, going to the gym twice a week, and had a very physically active life all round, and have noted that many other pwME have come from similar physically active high-fitness scenarios. So, I'm not at all sure how an 'allergy to exercise' theory figures into it. I wish these people would simply admit that they don't know what ME is nor of any effective treatments, accept what we've known all along, that pacing is the only thing that helps manage it, and butt out until some real science finally comes through.

 

It's bullshit idd. I've played football twice or three times a week when my illness really started to take it's toll, alongside 2/3 times fitness and at a certain point even kickboxing to raise my stamina. Pretty ******* far from fearing exercise.

 

If I say I was doing sports before and still do as is possible (not so much ) and this doesn't change my state to any better, I NEVER get an answer to why is that. That's very frustrating, to say it nicely.

There are others, too, who did an organized sports program - some who were professionals - who got sick and still tried or try to do anything "exercise-like", who know EXACTLY how to increase training volume and intensity and how to endure pain (no increase without pain) - and it simply doesn't do any good. Especially "sports people" are very estranged by this fact. Sports always did them good - why not anymore?

Some days ago, when I took some steps (no lift) an old man ran past me up the stairs. That's not a cool feeling, not for someone who once made 100km bike tours, too (which is not so much actually, if you're healthy; I know another old man who makes longer tours easily).

And then there come "some people" and say "exercise and talking will heal you". I just don't get it.

I am not so surprised to find that on the Mayo homepage.

 

Do you think it might help anything if I asked them if they could explain to me why exercise doesn't help me although I do light training as proposed by them? Probably not.

 

Kaiser Permanente is similar. Their recommendations for GET and CBT were made less prominent over the summer, but they are still there.

Kaiser Permanente has 11 million members.

I suspect changes won’t happen to these major websites until the CDC updates their website for medical professionals, which I think is delayed until end of year.

ETA: As a Kaiser Permanente member, I have a formal complaint to member services regarding their recommendation of GET/CBT.

 

They'll say you're not doing it properly, you should be doing it under the guidance of a trained therapist. If that doesn't work, they'll say your therapist isn't doing it properly, or you aren't co-operating properly, or you can't have ME/CFS otherwise you'd be improving. They have an answer for every occasion, and it's never that they could be mistaken.

 

@TiredSam
You're completely right

I really thought about getting real answers from those people...

 

Why do people sign up for Kaiser? And once members learn that scripted medicine is a huge failure, then why do they stay? It’s always puzzled me. If you have a cookie cutter illness, and are not a senior citizen, then possibly the system works, assuming your surgeon has slept in the last 24 hours.

Oh yes, member services. They do nothing and function more like an HR department at a large for profit company. Their main goal is to avoid a lawsuit (or win a law suit), and thus they will gather up as much ammo on you as possible, just in case you decide to take legal action.

 

Not to hijack the thread, but due to my personal circumstances, I don't have a choice. It's Kaiser Permanente or no medical insurance. From my perspective, I feel fortunate to have Kaiser.

 

I was just told by my OT after questioning her, ooops sorry “highly specialist occupational therapist” that she has many years experience in helping people with ME and knows exactly what she is talking about, and I will get better.

 

Did you get that in writing?

 

I totally agree with you! I don’t see her anymore but she is my go between between her and my specialist which in that respect she is very good. It was because of her I got my diagnosis for EDS! Despite her ignorance, I would agree that she is very knowledgable and knows her stuff. It she contradicts herself a lot. If she was just to change the way she approaches her patients and sticks to it, I believe she can be of a huge benefit to many patients. She did give me some useful tools which has helped me amensley, but then she opens her mouth and spouts the garbage.

I wonder if she actually believes the garbage she spouts, because in the next breath she’s telling me I need to rest more, drop my days or I will end up bedridden and may never find my way back etc........ maybe she says what she does cause her hands are tied and she has to do what the nhs guidelines states. Who knows!