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

[Valentijn]

Yes, They had us do aerobic activity. I'm 27 and they had me at a target heart rate of 135-145 and I thought they were crazy as heck for that. I mostly did it at 105-110. Anything higher than that made me extremely fatigued.

135+ would probably your threshold for accumulating lactic acid at your age, and could be where exercise starts causing problems.

Could you describe your PEM? When does it start? What are the symptoms you get with it? How long does it last? Is there anything you do which seems to help alleviate it?

 

[Molly98]

I honestly have no idea how I'm going to go back to work right now. 40 hours a week seems like an impossible task, especially when I need to be mentally prepared for anything and work around it. They encouraged us to find jobs that were able to be done in the realm of our disabilities. For instance, I used to be a server at a restaurant. There's NO way in hell I can do that. I need to sit for long periods of time.

It seems that the course was like a 40 hr a week and you were saying that you were having real problems with cognitive issues during that time and the sensitivities, what job would you be able to do that your cognitive problems, which would be very exacerbated by working itself would not interfere with? and what employer is going to employ you with these difficulties?

I would really love to be able to work again but even in my better days and time I still struggle to think of anything that I can do. Aside from the physical the cognitive problems, which worsen massively after a short time make me pretty much unemployable. No one wants to employ someone who can't think straight after an hour or forgets everything, can't follow or engage in a conversation after the initial 20 mins. or whose concentration deteriorates rapidly after 20 - 30 mins and they make all sorts of errors.

If I was an employer, I would not want to employ me

How do you find a job within the realm of your disability if the level and range of your disability excludes pretty much all jobs?

Also, say for example if I sit up right for 20 minutes doing computer work or something it is likely to add to my cognitive and physical difficulties and bring on PEM which will take me out of action for 1 to 2 days, which will mean Iam unable to do any work during that time. However if I lay down I may be able to use the computer for an hour or so and not bring on PEM.

If I use darkened glasses again instead of lasting 20 minutes I may be able to tolerate an hour.

Someone may feel well enough that they can manage an hours computer work from home. But if they were required to make the journey into an office, be bombarded with stimulation in the office, they may not be able to manage it at all and the quality of any work may be extremely compromised. Yet it seems from what you're saying on the course that using aids or making adjustments was frowned upon and strongly disapproved off and you were encouraged to do without, which seems contradictory to me because these aids and adjustments are exactly what is more likely to help you better tolerate any activity.

In writing this, for example, I am lying down in a semi-darkened room, with specialist glasses on, with no noise or distraction, and using dictation and reading apps on my computer, this is what enables me to do this. Takeaway these aids and adjustments and the act of reading and writing alone would cause eye pain and strain and fatigue that I would be unable to open my eyes and need to wear an eye mask and it may take days for this symptom to calm down.

Would the same techniques of encouraging, or taking away aids and adjustments be used for other illnesses and other disabilities by Mayo?

For example would people with MS or RA be encouraged to do the same?

Would people with physical disabilities be encouraged to not use the aids that actually enable them to do the things they otherwise would not be able to do.

If I use a wheelchair or scooter I am occasionally able to go out, it enables me. Even then I may still suffer PEM for a couple of days as a result, which is what happened this weekend. That then puts me out of action for two days, bad days as they may refer to them at the Mayo clinic. I would be useless for any kind of work in these two days. During this time if I tried to do anything other than lie in bed resting I would exacerbate PEM and prolong its considerably, and put myself at risk of full on crash all of which would prevent me from working.

I have not had the experience of customising myself to stimulation and my sensitivities improving. It has been the opposite experience for me. I have had to reduce all stimulations massively and rest and rest and rest again, and over time my sensitivities have lessened and my toleration improved though this is still a big problem for me and prevent me from interacting much in the outside world.

 

[Molly98]

My physical fitness didn't change, my mood actually worsened (I went off my antidepressants there, too). I saw a number of people, myself included, that were unhappy with their work-up and didn't accept the diagnosis. I saw several people detox off of opiate medication and after the program, they just hated everyone, hahaha.

Were you encourage to go off anti-depressants? was everyone encouraged to regardless of the state of their mental health? was taking anti-depressant seen as a negative thing, or a sickness behaviour, like a crux you were dependent on in the same way as opioid medication was withdrawn?

I ask this as I have PTSD, I tried coming off anti-depressants because I wanted to not because I was advised, I intially felt I managed well and felt physically better for it ( a little , not as in better better) I did everything I could to regulate and manage my mental health, meditation, mindfulness, gentle yoga, eating well. I thought I had managed it well and was pleased with myself. After a couple of months, I spiralled and fell into a crisis which was life threatening for me, I was back in a living hell and just wanted to be dead. I needed intervention. I went back on to a different antidepressant and luckily after the initial phase, my mental health has stabilised to a degree.
This was a highly dangerous experiment at believing that I could think myself better, stay positive and manage without medication.

 

[Molly98]

I figure that I was able to get away with pushing myself because I was young and I hadn't been sick for a long time. But I paid for it in the end. Based on my experience, this is an extremely dangerous approach that most likely will make patients substantially (and permanently) worse in the long run.

I agree with this, it is very interesting however to get more of an insight into this approach and here exactly what it involves. I would love to be able to overcome this illness with my will and pushing through, being a former athlete, this came naturally and was what I have always relied on in life, but pushing through is the arch nemesis of this disease as most of us have discovered to our peril.

I would be really interested in hearing how @Quemist manages over time and long term. I hope you will stay with this community even if you get better @Quemist I would love to hear updates to see how you go and what in the long run you find works and doesn't for you and if there are any long-term effects from this.

 

[Hutan]

Thanks @Quemist.

I think programmes of the type that you have done have some utility for people with relatively mild symptoms of ME/CFS who are already recovering. Given that you have only been sick for a fairly short time, I expect and hope that your improvement will be sustained. I can imagine for example my daughter, who regained most function after two years, would have found a course useful to give structure to her recovery.

Based on my experience, the Mayo Clinic program's insistence of no more than eight hours in bed is contraindicated for some patients. On both occasions I was treated by sleep "specialists", similar sleep-restriction recommendations could have cost me my life.

But I'd like to support what @Old Bones said. My son was 13 when he became ill and has had ME all through his growth spurt. There have been months when he has slept 20 hours a day. There were times early on, and occasionally now when he has something important on, that I will try to get him out of bed before he is ready. And it is almost impossible, even when he had been determined to be up in time.

I have read that crucial chemicals the body needs for growth are manufactured during sleep. I believe that if metabolisms are down-regulated, young people have to sleep longer to achieve the needed levels. And therefore more sleep is what the body needs. I hope that parents of young people with ME would not restrict sleep when trying to help their child back to health.

Even for adults, I think our bodies are pretty good at telling us how much sleep we need if we aren't taking sleep-influencing drugs. I've always been able to wake up at exactly the same time each day, but now if I do more than normal I naturally sleep later the next day. If I can't, then I can end up really falling in a heap.

Similarly, there are times when I can't think, can barely speak, things hurt and everything just seems overwhelming. The only thing that makes things better is an afternoon sleep - and it doesn't affect my sleep at night.

The Mayo approach is being applied to people with a wide range of issues, not just CFS, and the therapists have little idea about the biology of ME (because basically no one does). Until there is a better understanding of the biology of our illness, I think we are the ones who should get to decide how much sleep we need.

 

[user9876]

I know that CBT/GET isn't welcome-- because most approaches reported don't work. They didnt' tell me "think" my way out of it- they gave us some coping strategies. They also REALLY emphasized that we were never going to return to the person we were before we got sick-- but they staunchly said that with good mindset we can attempt to have a good prognosis towards having some semblance of life outside of of our illness. GET for us was extremely below most thresholds. I was seeing a physical therapist before the program that was really wearing me out. The therapy at Mayo was so far below that exertion limit to the point that it was very benign. I certainly am not recovered but I am better and I'm not constantly freaking out about how this ruined my life.

This doesn't sound like a PACE like therapy at all. PACE claims to help patients recover hence their desperation to publish good recovery rates - also the claims made to patients are that it will help them recover. Also the GET in PACE is intended to push patients beyond their limits and outside of their exertion limit. Jason has an alternative approach envelope theory approach which if I remember correctly he suggests activity is good as long as it isn't outside of the exertion limits. Generally speaking I think when patients report harm with GET it is because they are being pushed outside of the exertion limits yet this is what PACE and White are claiming is safe.

 

[wdb]

Hi Quemist, in your initial post you used the term trial, do you mean a proper clinical trial ? If so can you tell us some more about that, have they published a trial protocol or methodology ?

 

[Cinders66]

I can't relate really. If I was at a level where I couldn't walk very much (I'm much worse than that now) I wouldn't be attending rigid 9-5 programs daily as I'd not manage it

I am intolerant to light and recently had to be exposed to more for some weeks, than my normal levels, if didn't reverse my light sensitivity or normalise me, it just hurt my eyes and brain, felt uncomfortable and caused me distress. I've never accepted the psychological model regarding sensitivity mainly because my sensitives always flared in relapse so they are clearly part of the illness, like migraine /head injury sensitivity, rather than pit pony being unaccustomed to light issues.

I will read through the Q and As but a three week intense course to turn around semi bedridden to approaching return work sounds out of the ME world.

 

[xrunner]

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

Can you tell what criteria they used for your diagnosis?
Thanks for answering all questions.

 

[slysaint]

It's good that you are feeling better but I can't get my head around a few things:

The trial was three weeks, 8-5pm

I am in NO way in recovery, just able to cope a bit better.

I can now walk and I feel moderately prepared to return to work in the next couple of weeks.

I am quite pleased with myself being able to do the odd thing during the day but no matter how 'easy' they made you take it there is no way I could do it for that many hours; even with rest periods. Presumably you also had to get to the clinic also (so what time did your day start?).

 

[wdb]

Just posting a link to this long thread on Central Sensitization Syndrome if anyone wants to read more about that

http://forums.phoenixrising.me/index.php?threads/central-sensitization-syndrome.41949/

 

[zephire89]

@Quemist, thank you for taking the time and energy to tell us about your experience.

I'm also interested to hear about any cognitive improvement you might have achieved, since those are the symptoms that are keeping me and many others from work.

 

[Woolie]

Most people in the therapy were super type-A (doctors, lawyers, judges, scientists, etc) and being sick has compeltely wrecked them. Their goal was to improve function, regardless of how we felt.

I know this is not relevant to the main thread, but I can't help noticing this. I love how people with a successful and a well-adjusted life get rebranded as Type-A in these sorts of situations. What could be more normal and well-adjusted than wanting to enjoy one's life and career? Now suddenly its a weakness, you are obsessed, driven, trying too hard.

So those who aren't career minded? Well they have a weakness too - they have become passive and depressed.

I just love how everything positive you do and are in our life gets rebranded as something that is suddenly dysfunctional as soon as you get an unexplained illness.

 

[trishrhymes]

Or could it be simply that those are the only people who can afford the treatment at Mayo?

.......................

Seriously, I'm pleased for you @Quemist, that you feel the treatment has helped you.

It's early days yet, though, and from what you say you are keeping well within your pulse rate limits, so you have not yet been tested with the type of aerobic exercise that PACE recommended.

From what I can gather, some people find the first stage of graded exercise OK, because they are starting at a very low level of activity. It is when they reach the stage of pushing through their threshold and pushing on regardless of symptoms that serious crashes occur.

Can you tell us how far you are able to walk now, or for how long, and at what pulse rate you stop and rest? And have you been told to keep increasing this each day or week?

 

[A.B.]

What could be more normal and well-adjusted than wanting to enjoy one's life and career? Now suddenly its a weakness, you are obsessed, driven, trying too hard.

So those who aren't career minded? Well they have a weakness too - they have become passive and depressed.

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.

 

[Molly98]

I know this is not relevant to the main thread, but I can't help noticing this. I love how people with a successful and a well-adjusted life get rebranded as Type-A in these sorts of situations. What could be more normal and well-adjusted than wanting to enjoy one's life and career? Now suddenly its a weakness, you are obsessed, driven, trying too hard.

I know @Woolie , we just can't win can we?

I am highly sceptical about the type A personality stuff. I certainly don't know where I would fit into this as I may be highly driven as an athlete or in 1 particular job and completely undriven and disinterests in something else. I am the opposite from perfectionist in my personal life, always tended to be very easy going.

I do think there is a selection bias here based on those who have the money to afford the treatment as already mentioned.

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.

I would also be interested in seeing how people fared on a suggestibility test before commencing treatment and whether this had an influence on them completing the course or dropping out and whether they interpreted treatment as successful or not.

I say this noting I would have fallen into these categories at times in my life

As for the central sensitivity theory, I can't help thinking that what is actually happening is that those therapists who week after week, day after day, are exposed to and treating patients in pain, who they have been trained to ignore, play down or explain away their pain, would over time become very desensitised to the pain of others.

It certainly seems that way from some of the shocking things @Quemist was reporting over on the other Mayo thread I have only just read.

I think the therapists, doctors here have been through a process of central desensitisation to the pain and suffering of others, so much so that they can remain quite discompassionate, detached and unaffected. And that this desensitisation has become the cultural norm within the Mayo culture that it then becomes unquestioned or perhaps even unquestionable without losing your place in the group/ community of staff.

It is interesting because there are jobs which do require a certain amount of desensitisation to be able to function and survive. I am thinking the army, for instance, perhaps also the emergency services, Oh and torturers and interrogators of course.

But what is interesting here is that their own desensitisation to patients pain and discomfort ( which is not a normal or healthy human response in my opinion, not if we continue to want to exist on this planet side by side) is instead turned around to being the patient's central sensitisation problem.So much so that they can inflict suffering on others and be unaffected, unremorseful and feel that their actions are justified.

 

[Jonathan Edwards]

This doesn't sound like a PACE like therapy at all. PACE claims to help patients recover hence their desperation to publish good recovery rates - also the claims made to patients are that it will help them recover. Also the GET in PACE is intended to push patients beyond their limits and outside of their exertion limit. Jason has an alternative approach envelope theory approach which if I remember correctly he suggests activity is good as long as it isn't outside of the exertion limits. Generally speaking I think when patients report harm with GET it is because they are being pushed outside of the exertion limits yet this is what PACE and White are claiming is safe.

Yes, I agree, I was about to question the use of PACE-like in some of the posts and then realised that the thread poster had used the phrase too. It does not sound much like the CBT and GET of PACE. The PACE CBT was specific ME CBT rather than general counselling for all and as you say the GET was pushy.

Perhaps the key point is that we really do not know what was being tested in PACE, because there is so much leeway available for 'therapies' given in this way. That is one of its biggest weaknesses. There are no objective measures of what the active ingredients of the treatment were (if any), quite apart from outcomes. That is why I would question any claim that PACE shows that no form of 'CBT' aka helpful talk or regulated exercise can help. Presumably if the wrong exercise regimen can hinder there is some sort of exercise regimen that suits better.

I see no reason why a physical illness should not benefit from the programme described here. Ankylosing spondylitis is a physical illness and getting sleep and exercise right is the mainstay of preventing long term disability. And since we know that quite a good proportion of people getting ME/CFS around age 18 improve very considerably, even if not totally, then it stands to reason that there is likely to be an optimal environment for making the most of the recovery phase. Equally, for those who are not in a recovery phase, it may be no use and may be a negative experience. The pity is that at present there seems to be no sensible attempt to devise methods for working out what really does help. Using standard randomised multi centre trial methodology in the way PACE did is no good. Something more intelligent is needed.

 

[Quemist]

Did you and others in the class notice that you/they were able to do more before getting PEM? Or is it just expected that being healthy and having PEM go hand in hand?

I did find that I was able to do more. PEM is pretty much expected, you just have to figure out how to maneuver around it more efficiently

 

[duncan]

I see no reason why a physical illness should not benefit from the programme described here.

Many, if not most, probably could benefit from such a program. But there are some that it could harm. ME/CFS seems to be one, but there are others that definitely are at risk for eliciting dangerous results. Potassium channelopathies come to mind. Fortunately, if someone has Anderson Tawil Syndrome, for instance, enough is known about the condition (i.e., that exercise can provoke paralysis and even death) that a program such as this would be eschewed.

But most mainstream medicine is not aware of the specifics of ME/CFS, or the potential implications to its sufferers of similar therapies.

 

[Quemist]

Just wanted to add my thanks for sharing your experience with us, @Quemist.

Also, a quick follow-up question: Did they say you had CFS/ME, or ME/CFS? I ask because this is Mayo in the US and they should have said ME/CFS. If they led with CFS/ME, that suggests whoever there crafted the therapy was likely influenced by a school of thought outside the US.

I didn't think the order mattered. They said it was diagnosed with a set of guidelines from the 90's- I'm not sure which ones off the top of my head.