USA - Mayo clinic

No lol, I should of....... all I kept thinking was I have to get out of there, is my time up yet hahahaha

 

Activity management to reduce my crashes! They use the basic principles of graded expertise and pacing without using graded excercise in the usually way.

1. You find your baseline and start there.
2. Then when you aren’t crashing anymore you gradually increase, it might be something small like sitting up.
3. If you don’t crash, you increase again and if you crash you go back until you are ready to increase again. It’s mainly done through pacing.
4. Relaxation Techniques, aids that I might need etc.

I hope I explained that right. Basically she gives you what to do and gives you the tools to manage your illness.

Edited: hmmm this one was in reply to someone saying something along the lines of ‘what was she treating’ but post disappeared lol

 

Keep increasing until you crash? This is guaranteed to perpetuate a push-crash cycle.

There's no "If you don't crash" about it - at some point you will crash, guaranteed.

Terrible advice. How about:

1. Reduce your activity and keep reducing it. If you are very fortunate you may be able to establish a baseline where you don't feel quite so shit.
2. Stay there. Don't try and increase.
3. If you stay within your baseline and are very very lucky, you may notice after a few months that you are doing a little more. Be grateful, don't push it.
4. Wait for the science. Sorry, that's it.

 

I agree, establishing your baseline early is the key. That way you can stay within your 'energy envelop' and not crash or cause PEM worsening down the road.

 

Totally see what you are saying hence the contradiction at times that she gave...... at some point we have all increased our activity when we felt better, and I don’t mean excercise just normal everyday stuff. Whether it be reading, watching telly, housework etc. Question is in what way do you do it safely?

Personally I took away with what she said and did it my own way, which rendered me bedbound for months 90% of time, which was my baseline, before I had some balance. I then just did little bits, like sitting up, reading with lots and lots of pacing and rest. Got so far and now found myself back in bed, which is where i have pretty much stayed for the last week. But I have to say my crash isn’t as bad as previous. The worst of it was only for a couple of days.

Edited:

 

I was told that, too, and was reminded of GET, but told myself it can't be, those are the "good" guys (doing ME/CFS research and going to conferences...). And I think it isn't GET, or is it? Whatever, it doesn't work for me.
I was told to learn relaxation techniques, too.

 

The goal is to increase activity, so it's GET. It just responds to symptoms instead of instructing patients to push past it. It certainly is not pacing, though it sounds like some clinics call it pacing. I think it's the approach usually used by psychosomatic clinics in the real world, versus in research hypotheses where they don't admit that PEM exists since it would debunk all of their claims.

It's still a harmful approach, even it isn't as bad as traditional GET which ignores symptoms, both for the reason @TiredSam mentioned (it inevitably causes crashes), and because it ignores the biology of the disease to promote a behavioral fix. And there's no evidence that even symptom-based GET is effective, so promoting it is still quackery just as much as the hardcore GET.

If an "expert" really wants to help patients, they'll at least pay attention to the bit in the NICE guidelines about using a damned heart rate monitor. And the priority should always be to avoid doing further harm with crashes. If they think that crashes aren't a problem, it's probably because they also think that ME is psychosomatic.

Generally just useless, but some techniques focus on tensing then relaxing muscles. Basically it can be another form of GET, and it crashed me for several weeks when one of the therapists at the fatigue clinic insisted I do it. Should've just told her to fuck off

 

I agree with @Valentijn it’s still GET but done slightly different where you don’t push through, I was lucky in the sense she showed me how to do lots of pacing and the relaxation techniques was just that, relaxing by listening to nature sounds, if I could tolerate, to help relax mind a body. But still she then spouted the other in the next breath, was very frustrating. I just took away the best bits and applied that, lots of pacing, relaxing and listening to my body, when it was time to do a little more I did.

 

@Valentijn
Yes, you are right, it is a form of GET. I was told to avoid crashes, though. At that point I believed I would get healthy if I rested enough. Ha!

But I was and am very surprised - this was told by the Scheibenbogen group. I am certain they don't think ME (CFS) is psychosomatic. Maybe I misunderstood?

 

That tells me that people who recommend that never tried for themselves. Yoga and Pilates are really hard. I never found yoga relaxing, it just hurt all the time and everywhere. Of course, the fault is in me...

 

Some clinicians are completely incompetent at understanding research, so they might believe that exercise is really helpful even for a biomedical disease featuring exercise intolerance. There can also be a tendency to submit to whatever authority says GET helps. Was it part of the official/standard treatment plan or similar? Maybe you got a rogue nurse or something

 

@Valentijn
The people I met are great, helpful and respectful, and in my view competent, doing ME research themselves. I do wonder if I misunderstood; but probably not. I never asked them, though, because I am too thankful for their help. And honestly, I don't dare

In the end, it didn't work for me in the least, no increasing my activity level step by step. Sure, in the last months some things improved, especially cognitively, but that's not due to the 'stepwise increment principle'. I was a bit disappointed it didn't work; I hoped to be able to return to work to earn some money; not to mention to have another life again. And I felt a bit pressure from family and friends that it didn't work.

I therefore think, in retrospect, there are several reasons why a "modified light GET" is not a good recommendation.

For me it would be difficult to manage different, contradicting messages, as @Ellie_Finesse tells, and I believe someone who is new to ME wouldn't know what to do either.

 

Merged thread

Chronic Fatigue Syndrome - Motivational Video (not a recommendation)

I'd make a comment, but this video pretty much speaks for itself.

It's described as a motivational YouTube "Video we made for our Mental Health class" on Chronic Fatigue Syndrome. No mention as to whether it's a real or fictional account.

It's the story of a man diagnosed with Chronic Fatigue Syndrome, who sees significant improvements in energy and mood by learning better time management and dramatically increasing aerobic exercise.

In the video, his doctor reviews the Mayo Clinic website (which is still full of CBT/GET) and curiously doesn't seem to order any tests or specialist referrals.

https://www.youtube.com/watch?v=1kkqz3uTzzc

Note: Please exercise caution if drinking a hot beverage while watching this video.

 

This is a video just made by some students for a class. I think it's better just to ignore it and not give it views. I don't really care if some students make a video for a class that misunderstands what CFS is.

 

I feel the content is relevant to "PsychoSocial ME/CFS News", and am leaving the original post and video link up.

 

It's a shame, it's a cute video that looks like much enthusiasm was put into it, but yes, it is totally wrong and I do care that some students made a video that misunderstands what ME/CFS is. It's out there on YouTube in the public domain for all to see, and the message anyone who happens across the video will get is that 'CFS' is just tiredness and can be easily overcome with a bit of motivation and, not with carefully-supervised-by-a-professional-therapist gently graded exercise (as the BPs-ers like to sell GET to make it sound harmless) but instead, with full-on intensive aerobic exercise such as gym workouts and going out running! It is giving out not just uninformed but seriously dangerous advice. Arrgghh.

 

One of my reasons for posting this video is these students apparently went to what they thought was a reputable health content source: Mayo Clinic.

Mayo Clinic definitely follows the PACE/GET/CBT/old CDC Toolkit model. Mayo also reviews their own content, so even a Healthwise update won't change their website.

Although it's not stated who their CFS content editors are, the Chief Medical Editor is Sandhya Pruthi, M.D. Her interests, ironically, are "breast diseases and women's health". She's also on Twitter.

 

I'd like to know where their peer-reviewed evidence is for that.