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

[Quemist]

@Quemist I am delighted for you that you consider this PACE-like therapy to have been a success. Nevertheless, the thread leaves me feeling quite unsettled over the prospect that severe patients, especially those who "check" virtually every symptom on the lists in the most-stringent criteria (CCC and ICC), may be forced into what sounds to me like torture. I'm left wondering how many have been harmed.

I completely agree. This therapy isn't going to be as helpful for people with severe me/cfs.

 

[Quemist]

It's always hard to glean anything from anecdotes imo. Paritcularly when so many different people, at different stages of possibly a range different illnesses are always likely to respond in different ways.

I'm really most interested in what it was that the people making money from these treatments told patients. Is there any more info you could share on that? Did they try to explain why results from trials like PACE were so poor? Was there any discussion of the evidence base beyond anecdotes? If not, did other patients seem concerned by that?

Oh, as a scientist, this drove me absolutely nuts. Without the evidence of trials, I was very skeptical. i've said it many ttimes since I came here- If it didnt' have the Mayo label on it, this would be considered just another quack therapy.
Anecdotes are hard- that was very difficult for me to take.

 

[ukxmrv]

Thank you so much @Quemist for your description of the Mayo clinic program and answering all of our questions.

I was also desperate when I agreed to a graded exercise program at the start of my illness. The assumptions behind it sound similar and I was told to push through the pain and my lack of mobility at the start. This was not a residential program but I have followed the progress of a friend who did do one in the UK. I'd also consider my experience with programs that use NLP concepts and I've also been on one of these.

My opinion, based on the programs I have done (and the other similar exercise ones since then) is that there is a limit or ceiling that patients can reach if placed in either a residential or graded exercise / movement / NLP program. This includes patients who are wheelchair bound managing to walk short distances again or even long distances in some exceptional situations.

The reason for these remarkable feats could be as simple as patients who have become deconditioned through a genuine physical illness being motivated to push themselves and discover that they can stand or walk a little. They can then build on the achievements from the course to regain their physical functioning. It may not all be easy for them and they may get into a crash/burn cycle for a while until they are recovered. Some will move forward and not need a wheelchair again with a complete return to work.

What happens to the others are more interesting. I've know patients to come from a NLP type course with such a high, with such hope and such confidence in their new health that they appear to function at a higher level and then crash spectacularly. They may enter a period of achieving these highs again, only to crash again in a pattern of ever descending circles until they reach their former level of disability. I know of one patient who still claimed to be cured but has never returned to any paid work as an example.

My feeling is that what we see on these courses is going to be a mixture of type 1 person (recovered but deconditioned) and type 2 (still sick but determined to push through it) and maybe other types as well.

I was Type 2 when I did my course(s). There was a short lift in my functioning (which the course leaders took as a "success") following by a pattern of pushing through / crashing which ended in my having to leave my (new) job. I would pick myself up each time and try and work through whatever I was fighting (and these were viruses, infections, injuries etc) until I could do not more.

Now I don't do any courses. My health today is worse than when I did my first Graded Exercise course.

I'd like to know what causes short term gains for some patients who are not deconditioned. It's as if there is a cortisol or some other switch that can be on for a short period in times of severe stress (like on a residential course) and then burns out leaving devastation behind. For the NLP course patients it's as if they get hypnotized into a state of being able to move a little again but when they come out of the trance they crash. Being able to sustain the trance or the hyper-stress state may simply not be feasible for longer than a few days or weeks.

People who have ME and are working may be like me. I had to focus and concentrate on denying the pain, stiffness, faintness, lack of mobility, sore throat, glands, temperature fluctuations and concentrate on getting to work, manage to sit in a chair, do a reasonable days work and then get home again. Over time I had to take taxis to work everyday, cut down on all extra conversations at work, eat lunch at my desk, change my clothes to one colour in order to get dressed, bath every few days, in the pattern of ever decreasing circles trying to stay at work.

This was considered a success by the GE clinic. Every bad viral attack was considered by them a temporary, expected setback that I could ignore and fight through to keep working. In a way they were correct but in time the body overwhelmed the focused determined spirit.

I'm frightened for the people on the Mayo course - all the Graduates such as yourself. All these educated, professional people who are desperate as I was. My concern is for their mental health, their access to support and the real risk of further health deterioration and suicide risk when they crash to a state worse than when they went to the Mayo.

 

[Quemist]

can you explain more about the "metrix" showing the therapy wasn't working for you, yet is seems like it did work for you. I am very glad you are feeling better

how about caffeine was that allowed? and or any sleep meds?
what about people that have very little support system. this illness can be isolating and some folks go away.

also when you were sitting was that in straight chairs.. or would a recliner like be ok?

also since they said dont just sit and succumb to TV ( i use that as a distraction when i dont feel well or i am pacing)
what do they suggest you do?

if you wanted to give an example schedule of what a couple days were like that would be helpful for me. as i read you mention they suggested "planned rests"

thanks for taking your time and energy to share all this.

was this program designed to get you back to work?

thanks again!

Caffeine was allowed, we had to sit in chairs, not recliners.
The program was designed to get back to work, but I honstly cant return to my job.

 

[Quemist]

I'm frightened for the people on the Mayo course - all the Graduates such as yourself. All these educated, professional people who are desperate as I was. My concern is for their mental health, their access to support and the real risk of further health deterioration and suicide risk when they crash to a state worse than when they went to the Mayo.

Desperate is the best way to describe it. I decided just to try everything they told me to do and go from there. The problem is-- if the therapy doesn't work, its deemed as my fault and not theirs.

 

[Cinders66]

PACE Trial was a year long. This three week course sounds more akin to a LP course. I can uunderstand how a three week course can be used "to get things on the right track" for those at favourable stages, Burrswoid Hospital used the three weeks time frame for its less severe residential stays but I don't agree that almost intensive training is a good general approach for an illness most people know is severe. complex and by nature generally has a prolonged recovery time, even in its best course. Add to that mayos premise, central sentisisation might be a factor or important but it might be much more than that, also focusing on thing such as diversion and distraction, banning sleep meds and not catastrophising (all very familiar to us who have seen the psychological approach, remember the great ormond street inpatient ward for kids? ) and the seemingly rushing an individual back to work , whether or not she transformed or not. I think the whole thing sounds very suspect.

What had thrown me was I read it as from bedridden to considering work in 3 weeks from the initial paragraph but from reading comments I now think it seems the walking began 2 months ago via physio and the aerobic aspect at mayo was 20 minutes 5 xr per week which is mild - moderate types of exercise so whilst that leap in 3 months is still pretty amazing it's not quite the miracle it seemed.

Maybe people who haven't been harmed by mismanagement can make more rapid natural recovery, I know of a mum in uk who got sick with ME diagnosis, rapidly declined to bed rest most of the time, went straight , via private health insurance, into a private rehabilitation unit and with pacing and increased activity rebounded quite quickly but I don't think this rate progress applies to many outside the unharmed fairly newly ill. And I certainly think the MAYO approach of intensive rehabilitation with those type rules would be disastrous for many which probably explains the drop outs and expulsions. Let's just hope the detrimental effects on their health wasn't long lasting.


I'm glad @Quemist you are doing well now, please don't push yourself too hard, getting to way you are now is a huge improvement. My question would be, if you progressed Well from not standing to quite long aerobic exercise yourself in 2 months do you think you would have continued to improve if you hadn't gone into a clinic and do you feel they got you to a higher level than you'd get yourself in a few weeks?

 

[hellytheelephant]

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!

I just wanted to say 'thank you' to you @Quemist. I am sure many of us appreciate the way you have phrased the heading of this thread, and your willingness to answer many questions.

 

[IThinkImTurningJapanese]

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.

I don't want to deviate from the subject of the thread, but.

Do we know this?

 

[Art Vandelay]

I'd like to know what causes short term gains for some patients who are not deconditioned. It's as if there is a cortisol or some other switch that can be on for a short period in times of severe stress (like on a residential course) and then burns out leaving devastation behind. For the NLP course patients it's as if they get hypnotized into a state of being able to move a little again but when they come out of the trance they crash. Being able to sustain the trance or the hyper-stress state may simply not be feasible for longer than a few days or weeks.

I've noticed something like this too.

Many people on PR (including myself) have mentioned that in that short window after we've exerted ourselves too much but before PEM sets in, we can feel hyper and energised. Perhaps by exercising and then pushing through the PEM and exercising again, they can delay the PEM by getting into this hyper state again and again?

When I was undertaking graded exercise, I also found that the exercise itself temporarily improved fatigue and pain. At the time, I put this down to endorphins released by the exercise. This stopped working after a few years.

I've also found that an episode of intense stress can temporarily pull me out of PEM because the adrenalin (or cortisol?) masks the PEM symptoms. This phenomenon is effective enough that I can attend a social function when I've been in a severe crash a few minutes before. Of course, I end up paying for it even more once the adrenalin wears off.

 

[Jenny TipsforME]

Thanks for discussing this in a balanced way @Quemist

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.

The PACE CBT was specific ME CBT rather than general counselling for all and as you say the GET was pushy

also think that pacing was their number one sell.

This three week course sounds more akin to a LP course

This doesn't sound quite like PACE to me either. It seems like some sort of amalgamation of pacing/Lightning Process NLP type thing/ GET and CBT. Pacing of course is generally popular with patients, so if this was the main sell it isn't so controversial. However, there are some alarming details.

Yes, we had people with back pain, fibro, people missing limbs from accidents, chronic fatigue syndrome, and pots

This seems bizarre as a combination. How could a treatment programme be appropriate for all these patients?

Ankylosing spondylitis is a physical illness and getting sleep and exercise right is the mainstay of preventing long term disability

Apparently Ankylosis Spondylitis patients have a similar issue with exercise being the sanctioned advice but a proportion find it harmful and want to challenge it.

The way that they structured this program there was really no room for over-exertion. They allotted 60 minutes for maybe twenty exercises.

This would be over exertion for most people with ME. Are people who can tolerate this recovering quite well anyway?

Absolutely no lying down allowed.

Sounds like torture for the POTS folk!

My main concern is the type of thinking behind this course has potential repercussions

Don't go back to the doctor if the symptoms are the same as other bad days. Don't drink too much coffee, don't rub areas that are in pain, do your best to not cry about it.

Obviously we can't go to the doctor every day we feel ill, but it feels like dangerous advice not to go back about recurring symptoms. Sometimes you have to mention a symptom several times before it gets taken seriously and doctors do forget details. For example I had symptoms that my doctor said if consistent he'd be thinking cancer. In my case it wasn't consistent but imagine if I'd not gone back precisely because it was consistent!

The advice to ignore symptoms goes against what I learnt in Social Cognition lectures. Being told *not* to dwell on something makes you dwell on it much more. Making patients feel they shouldn't cry/feel down about being ill is especially worrying given the suicide incidence in ME. It seems healthier to foster an environment where you accept living with chronic illness is damn hard and it is ok to face this and talk about difficult feelings.

During my first sleep-restriction attempt, I fell asleep behind the wheel of my car. On the second occasion, I developed frightening cardiac issues.

It seems to me that they don't understand enough about ME to make this sleep advice. I think this should be on our radar more. My sister had this advice and she had the sort of ME where you fall asleep in your food.

appear to function at a higher level and then crash spectacularly.

had to focus and concentrate on denying the pain, stiffness, faintness, lack of mobility, sore throat, glands, temperature fluctuations and concentrate on getting to work

I used to be able to block out symptoms. I don't think this was a good plan though. Also it isn't necessarily a choice. I'm too ill now for this to be an option. In between I had a bedbound relapse. I think over doing it was involved, but so was a virus, so hard to pinpoint.

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

This is definitely what I'd think but I've just started annualised hours, averaging 2 hours a week, working from home. This work fell in my lap. You never quite know what the future has in store (good or bad!).

 

[A.B.]

In my view these motivational programs don't increase the person's energy reserves, other than perhaps by adjusting sleep in those people where it is a problem. They can create a high but without increased energy reserves the person will soon fall back to whatever level they were at previously.

 

[PennyIA]

I've already posted other things in the other thread... but just as an caution.

I, too, felt short-term mild benefits from the initial three week treatment. I believe at the time I was suffering more from POTS related symptoms than the ME/CFS related symptoms.

Sadly, it didn't last more than a few weeks.

 

[Gingergrrl]

@Quemist Am on my phone and it's not letting me quote but many pages back you stated that the treatment plan was the same regardless if the patient was in the program for a limb amputation or for POTS.

This is very illogical to me at best and very dangerous/harmful at worst. Can you explain Mayo's philosophy on why different diagnoses would not have individualized treatment plans?

 

[Snowdrop]

Just a small note here--People are starting to ask @Quemist questions she has already answered earlier. She seems game enough to respond though.

I have one other question I had forgotten earlier and a comment.
With ME many people have the experience of classic ME symptoms and also sadly have symptoms of other AI or other illnesses eg celiac, IBD, Sjogren's, Mast Cell Activation, Rheumatoid arthritis, MS, Psoriasis,
did you experience any of these concominent to your ME?

As a scientist I'm surprised that you responded that you didn't think the criteria mattered for diagnosis.
For ME patients it's pretty much the International consensus criteria or the Canadian consensus criteria that accurately portray ME. The Holmes and Fukuda definitions (of 1990's US) capture less classical ME and more fatigue of unknown origin.

Though as a side note this issue of diagnosis will soon be cleared up hopefully with the work of the Open Medicine Foundation and others.

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.

I have seen this happen in so many different ways by now--as I expect have you. It's very frustrating.

 

[Valentijn]

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.

That would probably be Fukuda, which doesn't require PEM. Most ME patients and specialists would consider PEM to be a mandatory symptom. Which is why I'm curious about your experience of PEM - it's what stops us from pushing beyond the very short term.

People with OI or other conditions can have a more common form of exercise intolerance which can benefit from exercise programs, or at least wouldn't be aggravated by one.

 

[Snowdrop]

This would be a generally acceptable defintion of PEM in the ME community I think: http://solvecfs.org/deciphering-post-exertional-malaise/

Edit to change for clarity

 

[ladycatlover]

Caffeine was allowed, we had to sit in chairs, not recliners.
The program was designed to get back to work, but I honstly cant return to my job.

I've "liked" your post (and others) @Quemist, as an appreciation of you sharing your experience. I'm very sorry to hear that you can't return to your job. If you can maintain some of your gains I guess the course will have been useful to you, but, as others seem to, I worry that it may have given you a false sense of improvement. I very much hope that you continue to improve, and at some time in the future you will be able to return to your work - the work you obviously love, not the waiting! Best of luck from sunny Liverpool... Don't know about you, but seeing sunshine always makes me feel happy.

 

[Apple]

Desperate is the best way to describe it. I decided just to try everything they told me to do and go from there. The problem is-- if the therapy doesn't work, its deemed as my fault and not theirs.

"We don't know what's wrong with you, so it must be your fault."

"If you don't get better with our 'treatment' - it must be your own fault"

Where have I heard this before?

@Quemist - I'm really glad it's helped your functioning a little bit, but please be careful. In one of your comments you say that you feel "moderately prepared to return to work" and then in another you say "The program was designed to get back to work, but I honstly cant return to my job."

Be sure that you are listening to your own thoughts and your own body, not just what they think you should be doing/thinking. Only you know if you are ready or not.

Good luck

 

[ladycatlover]

I've also found that an episode of intense stress can temporarily pull me out of PEM because the adrenalin (or cortisol?) masks the PEM symptoms. This phenomenon is effective enough that I can attend a social function when I've been in a severe crash a few minutes before. Of course, I end up paying for it even more once the adrenalin wears off.

I can really relate to that - my parents died (both after months of illness and in nursing homes) nearly 10 years ago, within around 6 weeks of each other. With my husband's help and that of a very kind funeral director I organised both their funerals, and even managed to speak at both of them. After that I was not in a good state. My *feeling* is that it's an adrenalin rush, and it's hard to slow down afterwards... until you crash. Kind of a false sense of energy and being able to do stuff, at least in the short term. (I have to say that I was very glad that I was able to speak at parents' funerals - elder daughter was standing by in case I couldn't manage, which helped a lot.)

 

[PennyIA]

I can help with answering some of the premise ... since I'm betting at this point @Quemist might fell a bit attacked by now. Let's face it, many of us have agreed to therapies we haven't necessarily understood nor wanted simply to try it. I don't know about you, but there are lots and lots and lots of things I've tried just because if it could help even slightly, I would take any improvement I can find.

I'll be honest, it was sold to me as "Pain Rehabilitation"... which I balked at.... and then ' pain management' which I think we would all think is a good thing. Managing the pain, is a good thing to learn, right?

And yes, it contains everything from chronic migraines to other health issues, as well as ME/CFS.

I think they tried to cover the other health issues with pacing and physical therapy with a mind towards finding ways to manage tasks. ALL OF WHICH were of benefit to me.

They also had an arm towards reducing pain management medications for chronic pain. (from the study showing it isn't as effective). When I went, they only asked people to stop taking pain killers. (it sounds like they might be expanding it).

BUT... I think it goes further and 'odder' than that.... I think that if they've done everything they know (medically based on their subset of what they are agreeing to)... so you have migraines and they've done x, y, and z... and you're not being helped. ME/CFS -they don't know what to do - here you go... pain from amputation ... the leg is gone... here you go... etc, etc, etc,... and basically without saying they are doing it? Calling all of that now MUS.

And now, if we can't do anything medically - now in addition to teaching pacing, yoga, physical therapy and reducing pain meds... now we're going to do a form of CBT and GET because that will help you cope with the pain/fatigue/health issues that we can't fix.

CBT was tied a bit towards you know we've done everything medically possible, now you just need to get on with living life and having something to look forward to, because now you are as healthy as you will ever get.

GET was tied towards increasing your activity levels and while it was all within the vicinity of don't over do things, take things slower than you think you can... it then also says... do more the next day. (smirk)

ALL THAT SAID? I would NEVER, EVER, EVER recommend someone go to Mayo for ME/CFS.

NOT EVER.

I think the general consensus in this group is founded in reality. I think the treatment at Mayo is all about just 'putting' everyone they can't 'fix' into a box and handing them tools so they don't keep pestering us is at play.

When I went, it was part of a study and I was told I would be contacted six times for follow up to see how well I keep improving. I crashed before the first follow up and told them so. I haven't been contacted since.

I'm pretty sure that (like PACE trial seemed to handle some of the patients) that the result is that I will just be considered as someone who 'didn't complete' INSTEAD of showing up as an Adverse Event... because of course, they still believe a little bit of moderate activity cannot do any harm - so the fact that I'm not in the study is unrelated to the fact that the continued attempt to keep increasing my activity level led to a crash.

SO, yes, everything everyone is pointing out as a flaw to their service? Yep, Yep.

BUT I didn't know that in 2006 (when I went) and then, add the fact that even when I did go, I was a skeptic? Doesn't mean I didn't have some improvement in the very short term (like maybe six weeks). It was immediately after my first crash when I WAS ALREADY SEEING SOME IMPROVEMENT... because I was already coming out of my crash as it was. I honestly think I could have done more physically anyway at that point than I was trying to do, because I was so scared of the upcoming crash.

But after crashing after six weeks after the treatment? I'm right back where I was before, I do less because I don't want to overdo it and crash again. If I did a little more? I might see a minor improvement... BUT because the dividing line between this feels good and this leads to a crash is a) invisible and b) a moving target and c) SUCH A DISASTER TO CROSS THAT LINE, it's better to err on the side of caution until we have a proven treatment or way to identify that dividing line.

NONE of this is getting through to EITHER the Mayo docs nor PACE authors. THAT's the root problem.