I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

[alex3619]

Again, back to the "did I really have cfs/me"-- she was pretty definitely diagnosed by a team of very expensive doctors

What diagnostic criteria are being used? Fukuda, CCC, ICC or something else? Did anyone have a 2 day CPET, qEEG, tilt table test or sleep study?

PS It seems this has already been answered, and the answer is something from the 90s. This is probably Fukuda defined CFS.

 

[Quemist]

I looked up my paperwork and it seems like they used the CCC criteria but also cited the Fukuda critera.

 

[Quemist]

@Kina-- I think your concerns are valid. Yes, I'm having a lot of problems with the therapy-- I wanted to share it with the group so that anyone who is refferred may be able to see what some of the good and bad aspects of the treatment are. I've had some good days but a lot of bad days, too. I think there is some benefit to the therapy but its hard to come to terms to the fact that most hospitals have no idea how to treat it.

 

[Quemist]

Thanks, @Diwi
YES- insurance. BCBS did a giant survey of the cost effectiveness of the program. Since a huge part is "don't go see any more doctors for your symptoms" insurance companies are saving a ton of money on the terapy.
I also still can't wrap my head around the lumped untreatable conditions.

 

[TigerLilea]

There was a questionnaire that they had me take. I came in in a good mood and low pain. When they had met take it three weeks later, my mood and symptoms were wrecked. I also didn't do any better on my physical fitness tests. Occupational therapy was not improved whatsoever.
Again, I cant help but think that theyre somehow cherry picking their data. I wouldn't be surprised if they find some way to exclude my data from the study.

I have to admit that I am also confused by some of your replies. You started off this thread claiming that you were feeling better and would be returning to work in the next few weeks. Now you are claiming that your mood and symptoms are wrecked and that you wished you hadn't gone to Mayo Clinic.

 

[TigerLilea]

Thanks, @Diwi
YES- insurance. BCBS did a giant survey of the cost effectiveness of the program. Since a huge part is "don't go see any more doctors for your symptoms" insurance companies are saving a ton of money on the terapy.
I also still can't wrap my head around the lumped untreatable conditions.

My sister-in-law who has FM was forced to take one of these programmes by her long term disability insurer and she ended up with permanent damage. Her doctor tried explaining to them that if they would allow her a year off in all likelihood she would have been able to return to work. The insurance company did accept full responsibility for her injury and now have to pay her until she reaches retirement age.

 

[trishrhymes]

Hi @Quemist, like some others here i have read your experiences at Mayo with interest and concern.

I have to say the treatment sounds like a cross between the petty rules of an authoritarian school and brainwashing, and i find it deeply troubling. You have described some experiences as helpful that on later reflection seem dubious, and some of the theories being pushed at you as both apparently logical, yet unfounded on any valid science, which as a scientist yourself has been confusing for you.

Following such an intense experience where there has been a lot to digest physically, mentally and emotionally, alongside the effects of coming off medication and fluctuations in your ME symptoms, i can imagine is extremely confusing and hard to process and make sense of, let alone draw any lasting conclusions about whether the treatment has helped or hurt you.

I don't think therefore it's fair to you to expect a completely consistent response at present. People are naturally questioning why you seem to be giving contradictory answers. I see this as a natural process as you move away from the intense experience and return to coping with your symptoms on your own.

I hope you can have a period of calm in your life now to stabilise your health, mental and physical, getting plenty of rest, and help from a good doctor in sorting out whether you need to return to some of your medication.

Don't feel obliged to go on answering questions and responding to criticisms in this thread if you need a break. You have been very brave and generous in sharing your experiences so openly. I hope you have found it helpful and supportive.

Do keep exploring the scientific developments happening in ME research. There is hope for the future.

 

[Jesse2233]

Thanks for posting @Quemist, understandable you'd have some mixed feelings after the program. Good on you for working through the nuances in real time and sharing your evolving thoughts and feelings

 

[Valentijn]

Also, they didnt' do any brain scans, which i thought was very strange. I want to get these things done but I'm not even sure if it'll help me.

I actually was admitted for presumed MS/POTS. Tingling/numbness is one of my biggest symptoms.

Weird ... a brain scan should be done to rule out MS. But once a certain type of doctor gets "CFS" into his head as a possible diagnosis, they might stop biomedical testing entirely. They believe that testing makes us think we're sicker, and that any abnormal results are probably false positives anyhow.

They pushed central sensitization as a main theory really, really hard. They said that most diseases will inherently cause some kind of abnormal response in the brain and therefore lead to more symptoms.

This is, at best, a vague theory with no evidence supporting it. Basically they start from "we can't find the cause of the symptom" then immediately conclude "your brain is just making you think you have symptoms even thought you're fine." It's superficially a little more biological than the previous (now disproven) theories used to bridge the gap between symptoms and the use of CBT to treat them, but it's just as nonsensical as the rest.

The best demonstration of this in the case of ME/CFS is that we have a lot more going on than pain or other sensitivity. How would central sensitization cause PEM? Or OI? Or swollen lymph nodes? Or ataxia? Or muscles giving out? It's completely absurd, yet ME/CFS is one of the diseases for which they push the central sensitization theory the hardest.

I'm looking into Vanderbilt next.

I'd suggest going with an ME specialist. If you can't get support for that, then at least go in with a list of demands for what you want tested with a non-ME specialist. No brush offs allowed! And always get a copy of all of your test results. Some doctors won't understand abnormal results, so won't say anything, and others will be convinced that abnormal results are a false positive.

Do I believe there is a place for CBT and GET with ME/CFS patients....yes.

No. Maybe real CBT, but not the symptom-denial bullshit that is the topic of discussion in this thread. And I have never heard of a patient needing GET to become more active. We naturally become more active when we can be. The bigger problem is preventing ME patients from being more active than their body can handle.

I also still can't wrap my head around the lumped untreatable conditions.

They believe that all of those conditions are psychosomatic, or have a large psychosomatic component causing some or all symptoms. Hence they see it as one illness, but with all the crazy people imagining different physical symptoms and having different diagnoses as a result.

But psychosomatic theories have an abysmal track record. Many have been disproven over the years, and none have been proven to exist. Peptic ulcers used to be caused by stress, but are now cured with antibiotics to kill the bacteria responsible. MS used to be the disease of hysterical housewives. Autism used to be caused by unaffectionate mothers. AIDS used to be caused by the stress of the gay lifestyle.

Now that technology and knowledge have evolved, these examples of supposed psychosomatic illness are shockingly ridiculous. It's even more ridiculous that ME/CFS is still being seen as psychosomatic, when basic and mainstream tests objectively prove PEM, OI, immune dysfunction, metabolic dysfunction, etc. It's completely absurd - but it's also the entire foundation of the careers of these supposedly "respectable" quacks.

And Mayo, unfortunately, is a place which is very supportive of those quacks.

 

[Woolie]

Psychosomatic explanations seem to be all about seeing moral failure in behaviour that is quite normal considering the circumstances.

People with long standing undiagnosed health problems that continue searching for answers are not applauded for their persistence but rather labelled as "wanting to be sick" or going "doctor shopping" or somthing like that.

Patients pointing out how the psychosomatic explanation given to them is incompatible with their lived experience are labelled as being in denial.

Parents doing everything to help their children frequently receive negative labels as well.

Patients that are well educated on their illness are viewed as difficult rather than an example to follow.

It's a destructive, irrational cult.

I would like to pin this entire post on my wall, @A.B.!

 

[Woolie]

What I also wonder is that those who are seemingly driven, do well at school, at careers, are used to doing well at things, pleasing teachers, bosses, family etc. are also the most likely to feel the need to please therapists and feel successful in the treatment and be compliant to authority and not prone to being trouble causes in a class situation in fact usually quite the opposite

Yes, I think you're right, @Molly98. They're the ones who will try desperately to comply, to find some value in what's being said - instead of saying "screw this".

 

[sue la-la]

Thanks for posting @Quemist, understandable you'd have some mixed feelings after the program. Good on you for working through the nuances in real time and sharing your evolving thoughts and feelings

@Quemist thank you for sharing your experience.
i'm wishing you much better days ahead

 

[Barry53]

I've asked myself this a lot-- the doctors at mayo diagnosed me with cfs/me and I fit the criteria.

What criteria were they?

Edit: Sorry - should have said Hello @Quemist. Thank you for contributing here .

 

[Barry53]

When did you do this trial?

 

[Barry53]

Although I realise it must be very difficult to discriminate ...

• In terms of purely objective measures, how much improved do you think you are?
• How much better do you actually feel in term of you general well-being and mental outlook?
• If at all possible re you answers to the above, do you understand why?

 

[IThinkImTurningJapanese]

... making me think it was more brainwashing.

That's exactly what it was. :thumbdown:

 

[Snow Leopard]

@Quemist Thanks for sharing your experiences, I know it can be hard to do so given there are some outspoken skeptics here that don't want to hear about it. I think it is worthwhile for the rest of us to hear genuine experiences, particularly when it is a hyped programme or hospital like the Mayo clinic.

It sound to me like your physical health hasn't improved much, but that your sense of self efficacy has improved. This is the same effect of treatments like CBT/GET - why they lead to people answering differently on questionnaires. Some people, Ellen Goudsmit* in particular have explicilty stated this for years - any effect of CBT or other progammes is based on improved self efficacy (and of course classic placebo effects, which are in fact distraction effects - being distracted from ones symptoms).

The question is whether this can be achieved using a much less stressful/intensive treatment approach (8-5PM is completely unnecessary) and at lower cost and without the stigma and false expectations being forced upon patients.

On the subject of deconditioning, severe patients, particularly those who spend all their time lying horizontally in bed do have deconditioning that make their symptoms worse - but reversing this deconditioning is difficult given the underlying constraints. This is why it is encouraged for such patients to sit upright - this on its own can help reduce the severity POTS symptoms over time for severe patients. But exercise is a funny thing - evidence shows exercise capacity as measured by VO2Max/peak is only improved when we push our heart rates above the anaerobic threshold, often to around 80% of maximum heart rate - and we don't need to do this for very long - a couple of very short bursts a week for a total of 5 minutes of exercise per week can increase our exercise capacity (unless your exercise capacity is already in the high-athletic range). Perhaps this range might be a bit lower for severely decondition patients. Whereas low intensity exercise, especially below the anaerobic threshold has no effect on exercise capacity in subjects (these were average/healthy people). The problem is that many patients develop severe symptoms after even quick HR spikes this high, or do not have the luxury of being able to spend extra time resting in the following few days (I do have the luxury of being able to rest).

This to me is the paradox of the concept of graded exercise - there is a lack of evidence to show that the lower intensity graded exercise will have any effect on physical fitness.

I however have tried the above exercise technique, doing very short sprints on my electric bike, to get my heart rate to spike around 170-180 BPM (max HR is ~200) and then letting the motor take over as I rest immediately after. A few bursts of this each week and I have managed to increase my VO2max to above average for my age (as tested in 2 day repeated VO2Max test by exercise physiologist). My ability to walk has improved a little, but the rest of my symptoms are just as severe - permanent painful headache, brain fog etc - obviously these symptoms are not affected at all by increased fitness.

*See Also:
"Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome"http://www.pec-journal.com/article/S0738-3991(09)00229-8/abstract

"Twelve Weeks of Sprint Interval Training Improves Indices of Cardiometabolic Health Similar to Traditional Endurance Training despite a Five-Fold Lower Exercise Volume and Time Commitment"
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0154075

 

[Quemist]

That's exactly what it was. :thumbdown:

Yeah... after a couple of days of thinking over everything, maybe this should be recategorized in the "emotional support" section

 

[ljimbo423]

@Quemist - Thank you for sharing your experience! I truly hope you hold onto what ever help you got in your pace-like adventure. It could come in very handy in the days ahead!

All the best-Jim

 

[Cheesus]

Yeah... after a couple of days of thinking over everything, maybe this should be recategorized in the "emotional support" section

I know I shouldn't laugh but this did make me chuckle.

Thank you for engaging with this thread. I can imagine it must have been very tiring as you have been subject to quite the interrogation, but you have nevertheless been attentive and not shied away from any line of questioning. This is a very contentious topic around here and I would like to commend everyone on how respectful they have been. Whoever said that patients victimise those who engage with GET?

I think it would be interesting reading for anyone who is considering the Mayo Clinic for treatment of their CFS/ME. Perhaps you could change the title to include the Mayo Clinic so that it is boosted up the rankings on Google? Just a thought.