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

[Quemist]

Hello, friends!

I just reluctantly did a PACE-like trial at the Mayo Clinic that focused on CBT and GET using the model of central sensitization. Ask me anything!

The trial was three weeks, 8-5pm (whew, I can't believe I lasted that long!!)
I had extreme difficulties walking, mostly bedridden for months. I can now walk and I feel moderately prepared to return to work in the next couple of weeks.

Despite feeling better, I am very nervous. I was an NSF fellow four years into a PhD in Organic Chemistry at an R1 university when I fell seriously ill and unable to care for myself. My onset was gradual since 2011 but hit very hard after I went on a trip and had a two-week food poisioning.

Ask me anything!

 

[Esther12]

What claims did they make to you about efficacy or recovery rates? What evidence did they cite to support any claims made?

PS: Pleased to hear that you're feeling better.

 

[TigerLilea]

Are you sure that you had CFS/ME?

 

[Quemist]

Are you sure that you had CFS/ME?

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

 

[Quemist]

What claims did they make to you about efficacy or recovery rates? What evidence did they cite to support any claims made?

PS: Pleased to hear that you're feeling better.

This was a pain rehabilitation program. They had a lot of anecdotal evidence, some published research about long-term studies. I was able to see a number of people leave wheelchairs and walkers and could regain a lot of function.

 

[Cheesus]

Do you have any hypotheses about why you think the therapies helped you?

 

[Quemist]

Do you have any hypotheses about why you think the therapies helped you?

I think that deconditioning was PART of it. I am in NO way in recovery, just able to cope a bit better.
I also can't emphasize enough that the physical therapy was very, very mild.
I also think that pacing was their number one sell. I think that trying some pacing was very good for my recovery and thinking of things as steps instead of all-or-nothing.

 

[TigerLilea]

I can see for someone with FM that GET would have some merit, but not for someone with CFS/ME.

 

[Quemist]

I can see for someone with FM that GET would have some merit, but not for someone with CFS/ME.

I agree with this. I do believe that I have CFS/ME that is not as severe as most cases. For this reason, i think that more diagnostic criteria needs to be established to properly differentiate between the two.

 

[Cheesus]

I think that deconditioning was PART of it. I am in NO way in recovery, just able to cope a bit better.
I also can't emphasize enough that the physical therapy was very, very mild.
I also think that pacing was their number one sell. I think that trying some pacing was very good for my recovery and thinking of things as steps instead of all-or-nothing.

I find it interesting that pacing was a significant element of their approach. That seems to be in contradiction to type of GET trialled in PACE, as that was directly contrasted against patients trying 'adaptive pacing therapy', which the authors found to be ineffective.

It seems there is a huge inconsistency amongst therapists regarding the application of GET. Some seem to encourage patients to actively push. Whereas others essentially have people pacing whilst encouraging them to do as much activity as they feel comfortable with.

What did you think of the CBT element of your programme?

 

[Molly98]

I also can't emphasize enough that the physical therapy was very, very mild.
I also think that pacing was their number one sell. I think that trying some pacing was very good for my recovery and thinking of things as steps instead of all-or-nothing.

Hi @Quemist,
Can you describe what the pacing was and also what the physical was?
and also were you told to push through symptoms in order to gradually increase your activity or to rest when your symptoms flared up?
If you were doing more did you get PEM and if so what did you do at such times? were you able to continue doing the course each day when you had PEM?
Glad to hear you are doing better, I hope it is lasting for you

 

[Quemist]

I find it interesting that pacing was a significant element of their approach. That seems to be in contradiction to type of GET trialled in PACE, as that was directly contrasted against patients trying 'adaptive pacing therapy', which the authors found to be ineffective.

It seems there is a huge inconsistency amongst therapists regarding the application of GET. Some seem to encourage patients to actively push. Whereas others essentially have people pacing whilst encouraging them to do as much activity as they feel comfortable with.

What did you think of the CBT element of your programme?

The way that they structured this program there was really no room for over-exertion. They allotted 60 minutes for maybe twenty exercises. If weights were used, we started at 1lb and didn't go above 8lbs or 10lbs after 15 days. We used elastic bands as resistance for one or two of the exercises.

CBT was very helpful. I'm having a lot of grief about losing my career as a scientist and what I might have done to cause this. I feel a lot more solid. They also did a good job of talking about "pain behaviors" and making sure that we are trying to refocus our attention to other things and distract ourselves. I also am having a lot of issues with family support and school/work. This helped with my perception of these three things significantly.

 

[Quemist]

Hi @Quemist,
Can you describe what the pacing was and also what the physical was?
and also were you told to push through symptoms in order to gradually increase your activity or to rest when your symptoms flared up?
If you were doing more did you get PEM and if so what did you do at such times? were you able to continue doing the course each day when you had PEM?
Glad to hear you are doing better, I hope it is lasting for you

Oh, we were most definitely told to push through our symptoms. Rest was allowed, but we had to kind of "schedule" it. The pacing was the idea of putting extreme moderation into practice and have that dictate how we were going about our day. We had a "difficult day plan" for when we're feeling particularly bad and worked on having a specific set of tasks we felt as though we could accomplish even when we had bad days.
PEM was something that I was experiencing as the days went by. They told us "you can't call in sick to a hospital"-- and tried to do everything to make sure that we showed up and tried to work the program they had for us. They also were very, very particular on not allowing us to do more exercise when we had a good day because they knew it could trigger a bad day.

 

[Molly98]

What do you think it was that gave you the ability to go from struggling to walk to being able to walk, was it the physical exercises? did they strengthen your muscles and was it this that gave you the strength to walk?

Did you do any aerobic activity during the treatment? if so what was this? was your heart rate monitored during and after this? did you have to keep it at a specified level?

Did you or your group suffer with autonomic dysfunction eg POTs and if so was this treated?

What sort of symptoms had you been getting prior to this and which have improved or disappeared would you say?

Sorry so many questions

 

[Quemist]

What do you think it was that gave you the ability to go from struggling to walk to being able to walk, was it the physical exercises? did they strengthen your muscles and was it this that gave you the strength to walk?

I think SLOWLY strengthening my muscles helped. I certainly can't walk a mile or anything, but I can at least walk some.

Did you do any aerobic activity during the treatment? if so what was this? was your heart rate monitored during and after this? did you have to keep it at a specified level?

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.

Did you or your group suffer with autonomic dysfunction eg POTs and if so was this treated?

Yes, we had people with back pain, fibro, people missing limbs from accidents, chronic fatigue syndrome, and pots. We were all treated the exact same.

What sort of symptoms had you been getting prior to this and which have improved or disappeared would you say?

My symptoms include tingling in extremeties that changes in severity, brain fog, memory issues, word finding, problems with math (I was a scientist before this and I had forgotten how to do multiplication), fatigue, pain when touched, extreme sound and light sensitivity, headaches, and occasional nausea.

 

[Molly98]

Sorry @Quemist , I do have a lot of questions, I am genuinely interested to find out more about your experience, I really hope you dont mind me asking. Do tell me if its too much though.

8-5pm daily for 3 weeks seems like an awful lot. Apart from the physical, how did you and others cope cognitively? were you able to manage this without your brain turning to mush and feeling like its stopped working and cant take anything else in, your speech coming out all jumbled and your concentration failing you after the first hour?

were you able to lie down during this time or did you have to sit during sessions?

How about sensory stimulation, was this limited, were adjustments able to be made?
Were you in a group during the process and how did you and others manage the sensory stimulation of this?

 

[Quemist]

Please, ask away! I really want to let people know about the experience. I am in NO WAY in remission and that wasn't their goal. I do think that a FEW of the elements of GET and CBT are helpful but by no means the only option.

8-5pm daily for 3 weeks seems like an awful lot. Apart from the physical, how did you and others cope cognitively? were you able to manage this without your brain turning to mush and feeling like its stopped working and cant take anything else in, your speech coming out all jumbled and your concentration failing you after the first hour?

8-5 was a lot. I seriously can't believe I made it through it. I have a tendency when I'm really fatigued to not look people in the eye. It's way too much sensory information for me to handle and I can't hear what they're saying. Most of the stuff they told me I didn't even comprehend. My speech was getting to be pretty bad on some days-- stuttering, replacing the wrong words. The idea is that if you just sit, you can prove to yourself that you might be able to return to normal function.

were you able to lie down during this time or did you have to sit during sessions?

Absolutely no lying down allowed. People who came in with heating pads were "tapered" off of them, everyone was expected to sit. One person hated sitting and had to stand for periods of time and they put them on a "taper" so that they gradually got used to sitting more and more, despite pain or discomfort.

How about sensory stimulation, was this limited, were adjustments able to be made?
Were you in a group during the process and how did you and others manage the sensory stimulation of this?

The hallmark of the program is that no adjustments are made. I got in the habit before the program of wearing sunglasses indoors because of the problems with lights. I had to stop doing that. One person slammed a door accidentally and I thought I was going to have a freaking seizure it was so painful. I was in a group every day, on average about ten people or so. Same instructions for everyone- gradual reintroduction to the stressors that you've become accustomed to blocking out of your life.

 

[Molly98]

My symptoms include tingling in extremeties that changes in severity, brain fog, memory issues, word finding, problems with math (I was a scientist before this and I had forgotten how to do multiplication), fatigue, pain when touched, extreme sound and light sensitivity, headaches, and occasional nausea.

Have these all improved now? which have you seen the most improvement in?

What have you been taught to do if you over do it and get PEM?

And what did they teach about pain behaviours? and is PEM classed as a pain behaviour?

When you were not able to do the heart rate they suggested during aerobic were you encourage to try and reach the heart rate or to do what you felt was OK for you?

What was the aerobic activty that you had to do and how often?

What have they recommend you to do to continue your recovery process scince ending the course?

Thank you for taking the time and trouble to answer all these.

 

[duncan]

Seeing as how your career path sounds intellectual rigorous, were there any attempts at rehabilitating your cognitive deficits? Did you have any protracted cognitive exercises that might have provoked PEM? Do you know if historically "concentrating" for any length of time provoked PEM?

What about emotions?

I guess what I am getting at is each of us has PEM provoked to different degree by different physical processes. You are not a roofer or a construction worker. Were they attempting to treat that aspect(s) of you that may be most subject to PEM?

Finally, what was there advice about the potential prospect of hitting that cliff that worries us all - going to far once too often and plummeting and never recovering from that plunge? Did they suggest that was a myth?

 

[BurnA]

I am in NO WAY in remission and that wasn't their goal.

What Was The goal?

I got in the habit before the program of wearing sunglasses indoors because of the problems with lights. I had to stop doing that. One person slammed a door accidentally and I thought I was going to have a freaking seizure it was so painful.

Sounds like you have light and noise sensitivities, how have these changed since the course?
Were they discussed?