USA: Cleveland Clinic

Yesterday I visited the Cleveland Clinic for the first time. Some aspects utterly impressed me and other had me puzzled.

My first appointment was with an internal medicine doctor. It started out well. I was seeing a doctor who knew what ME/CFS was for the first time in my life. He told me I definitely had an organic disorder and acknowledged it seriously impaired my activities. He used a questionnaire based directly off the NAM criteria for diagnosing me. Asking if I had fatigue, PEM, etc. And after I said yes to all the required questions he said I definitely had ME/CFS.

Then it started getting weird. He began making all these bizarre and unevidenced claims:
  • ME/CFS always occurs when someone experiences nutritional deficiencies, excessive stress, poor sleep, a diet that suppresses energy production, and (sometimes) not enough exercise.
  • He has a treatment plan that involves getting better sleep, taking supplements, exercise every single day, and a diet of sufficient protein and no refined carbs or sugar. The exercise sounds like it's tailored to people's energy envelopes, as opposed to GET, but he gave few details.
  • ME/CFS is caused by lowered epinephrine and norepinephrine production, which leads to lowered ATP production.
  • You can confirm a diagnosis with a urine test for metanephrines. It's always low in ME/CFS.
  • Most people who adhere to his program fully recover within 12-18 months. When I asked, he told me he treated over 400 people with ME/CFS or fibromyalgia, and that many of his patients resumed full-time work or intense exercise.
I was taken aback. Everything he said would fill with hope a patient with an average level of scientific knowledge. But I'm an S4ME user who's seen my fair share of quacks from afar. Immediately, I compared him to "the goat testicle guy" and Igor Markov, someone who believes ME/CFS is caused by "kidney disbiosis" and claims a 93% cure rate.

I know the world's best ME/CFS specialists, like Dr. Levine, the Bateman Horne Center, the Stanford ME/CFS clinic, or Charite Berlin don't promise anything like this. They give treatments and recommend pacing, which helps a little if at all. When someone promises more than that, it's sketchy.

I'm weighing trying this. If his guidance on exercise is alright, there's nothing dangerous in here. And if it's really wrong, I'll be proven right. Since there's no evidence-based ME treatments, I'm not too hesitant to try something non-evidence-based.

What do you think about this guy? Do you have the same concerns?
 
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Your internal medicine doc sounds a lot like the Integrative Functional MD I was seeing in early 2000. He didn't rec any type of exercise though.

The internal medicine doctor I saw in 1992 acknowledged CFS as well, but he no longer believed that it lasted more than 10 years.
 
Interesting. It's good you now have a diagnosis and a doctor who believes you.

I don't suppose the doctor told you the source of his theories - any research he or anyone else have done?

Did he do the urine test and give you the results and what the normal range should be?

Can you share more about the diet, supplements and exercise?

I think if it were me I wouldn't believe it - but I would be tempted to try it just in case it works, provided the exercise regime is possible without PEM.

Edit: To be clear, I'm not recommending you try the treatment regime - it has no basis in any research we've seen and sounds highly dubious. My comment was more about the natural human reaction to want it to work.
 
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Thanks for relating your experience of the Cleveland Clinic to us. I am glad someone "believed" you, but was a little worried about the content of the session as some other members (and you yourself) have expressed. Additionally this point jumped out at me:

"Most people who adhere to his program fully recover within 12-18 months"

To me these kinds of claims are the hallmark of quack "medics" or where something is not right. I was once told by an "integrated medicine" "doctor" (he was a medical doctor) that I had something like a 75 percent change of recovery if I did what he was saying [a quack and fairly fringe/possibly dangerous "treatment"] - I forget the exact figure. He made it sound like it would have been higher but in my case it was maybe a little lower. He tried to say it was his clinical experience. I don't know if it was total BS and a complete scam, or if he really believed it in part. It didn't really matter. It was manipulative.

Anyway, this is an unacceptable and unevidenced claim to make to ME/CFS patients and has no place in a treatment plan; it's totally bogus and plays with people's feelings and judgement.

I hope this meeting helped you, though. Again, it's positive that the doctor seemed to know how to diagnose ME/CFS. This is progress. I hope you can use this for some good. Sending love. x
 
Trish said:
Interesting. It's good you now have a diagnosis and a doctor who believes you.

I don't suppose the doctor told you the source of his theories - any research he or anyone else have done?

Did he do the urine test and give you the results and what the normal range should be?

Can you share more about the diet, supplements and exercise?

I think if it were me I wouldn't believe it - but I would be tempted to try it just in case it works, provided the exercise regime is possible without PEM.

Edit: To be clear, I'm not recommending you try the treatment regime - it has no basis in any research we've seen and sounds highly dubious. My comment was more about the natural human reaction to want it to work.
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L

Good points @Trish


@RedFox

Your experience sounds familiar for sure. Sounds like you've seen other practitioners of similar ilk. I have. They were all so confident they could cure me. When it became clear they couldn't, my disease and lack of improvement became my fault. A number of them made sure to tell me how many pwME they had cured. Sometimes that came across like a reprimand, because I wasn't better.


Good you have a diagnosis. Are you getting documentation to that effect from the Clinic?
As well as other documentation, e.g. test results?

@Trish is right about the strong desire to get better. It's like a magnetic pull. I think many of us spend a lot of money, and go to great lengths to try improve or recover. That is as opposed to the BPS'ers who think we are satisfied with our situation.

Lots of these practitioners sound so convincing. I too wonder if this doctor has authentic science to back up his claims. As you say, world experts don't recommend this protocol.

Interesting that a world class clinic would support non-evidenced based protocols. Of course, we have seen other casual attitudes towards the need for scientific evidence.

The supplement regime could very likely be expensive. Well, when isn't it...

I think you are very wise to ponder this whole idea before signing up.

:)
 
DokaGirl said:
Good you have a diagnosis. Are you getting documentation to that effect from the Clinic?
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Yes. Got G93.32 (ME/CFS) on my chart.

He's ordering strange and specialized tests I never heard of before, which could supposedly confirm my condition. Besides the urine tests, there are blood tests.

Cleveland Clinic is a notch above anything I've seen before. It shows in the little things. When the phlebotomist drew my blood, it barely hurt. It hurt so little I could even watch him fill up the tubes. Then he applied the gauze with skin-safe tape.
 
Just because it's a top clinic doesn't mean their understanding of me/cfs is superior. (e.g. mayo clinic) Pretty much every point you mentioned is a red flag. Mayo also told their patients similar recovery rates. ME/CFS isn't caused by lowered adrenaline and noradrenaline. Metaphrines? All I get in google is a link to a Wyller study.

ME/CFS always occurs when someone experiences nutritional deficiencies, excessive stress, poor sleep, a diet that suppresses energy production, and (sometimes) not enough exercise.
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Sounds literally like the BPS tagline.

Btw @Jonathan Edwards I recently saw a rheumatologist who suggested duel arm tendonitis and rib pain can be caused by deconditioning. Any truth to that. I don't exercise but I'm not bedridden kind of deconditioned.
 
RedFox said:
Then it started getting weird. He began making all these bizarre and unevidenced claims:
  • ME/CFS always occurs when someone experiences nutritional deficiencies, excessive stress, poor sleep, a diet that suppresses energy production, and (sometimes) not enough exercise.
  • He has a treatment plan that involves getting better sleep, taking supplements, exercise every single day, and a diet of sufficient protein and no refined carbs or sugar. The exercise sounds like it's tailored to people's energy envelopes, as opposed to GET, but he gave few details.
  • ME/CFS is caused by lowered epinephrine and norepinephrine production, which leads to lowered ATP production.
  • You can confirm a diagnosis with a urine test for metanephrines. It's always low in ME/CFS.
  • Most people who adhere to his program fully recover within 12-18 months. When I asked, he told me he treated over 400 people with ME/CFS or fibromyalgia, and that many of his patients resumed full-time work or intense exercise....

What do you think about this guy? Do you have the same concerns?
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:nailbiting:
 
Sounds like the same old nonsense using slightly different words. When you don't count the misses, it's easy to claim success. As long as you don't really care whether it's any true. These people never check afterward, they all use the same logical fallacy: patient didn't come back = better.

All over the place in LC forums you see the same, the same as with us: most of them gave up seeing doctors. They don't come back because they know it's useless, and more than anything they're done being insulted and disrespected by someone who clearly isn't putting any effort into it. This feeds into this process because there is no actual mechanism for feedback or quality control.

One thing has been made clear with LC: either we solve this problem, or it doesn't get solved. Medicine is not up to the challenge. And by us I don't mean us on the forum, I mean the global patient community, joined with long haulers.

It's beyond clear that this is immovable failure, they can't process having failed this massively, so they don't. Only a complete solution will change things, like with ulcers. You can't reason people out of an unreasonable belief system that isn't bothered with reality.
 
dreampop said:
My experience has been that a clinician will start with the bio-social and leave out the psychology at first, at least directly, and then add that element in. In practice, this ends up sounding it does here, me/cfs as a lifestyle illness. Which is offensive by itself.
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I think those attitudes are more widespread than is generally understood, and far from limited to us.

The number of times I have seen physicians basically express the opinion that nearly all diseases are "lifestyle", that if people weren't so stupid and behaved healthily most diseases could be eliminated, is seriously alarming. It's a very popular idea. Very commonly raised during the not-subtle-at-all elimination of "weak" people during the big waves. Eugenics, so hot right now. And basically always.

It's a version of the just-world fallacy. Just as bad, but with the extra awfulness of unaccountable power that incentivizes acting this way.
 
rvallee said:
These people never check afterward, they all use the same logical fallacy: patient didn't come back = better.
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I told Mom that. People stopped seeing him because it doesn't work, and he may have assumed they recovered. He gave an anecdote about someone in their mid-20s who was a high-level table tennis player. He got ME, saw him, eventually completely recovered and returned to playing ping-pong even better than before, and went to the Olympics. I presume he was one of the 5% who recover naturally.
 
I also was told that it would take 12 - 18 months for me to recover. One of my regrets is that I told that to some people around me. Of course, that prediction did not come to fruition. I was surprised that one of them remembered what I said and held me rather accusatorily to account for why that did not happen, as if I did something wrong and still "wanted" to be sick. In hindsight, I would not have told anyone that if I had to do it over again.

Some of the tests, beyond the usual, that doctor ordered did show abnormalities that did point to problems that correspond with leading hypothesis regarding ME/CFS. And for that, I am grateful because it did give me validation just as RedFox was seeking. I spent a LOT of money on supplements, etc. I would say that some helped, but most did not. Many of them my body could not tolerate and made me much worse for a time until my body could rebalance itself back to my illness baseline. After a few years of doing this, I decided to stop. I did not want to waste any more money. I am still on a few of the supplements I found helpful. I tried. I remain ill and housebound. I'm glad I stopped searching and now just want to live a quiet and peaceful life without the discouraging up and down seeking an answer caused me. That alone made living with ME/CFS better.
 
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