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

[Quemist]

Thanks.
Was the regulating of sleep suggested by Mayo?
If so what was the recommendation?

Yes- sleep was an issue for most everyone in the program I was in.
To treat it in this particular program, they had everyone stop taking their sleep medications (no joke) and insist on no more than eight hours in bed and wake up/sleep at the same time every night. They also suggested that you read fiction-- only read fiction right before bed, read in your bed (that was surprising) and don't read fiction any other time. Kind of a classical conditioning thing.

 

[Snowdrop]

Interesting.
Were you on sleep meds prior to this?

 

[barbc56]

Why would they wean you off sunglasses when it is a technique to help symptoms? To me that sounds like an implied way of saying these sensitivities are not real. I do this and find it helpful.

Also I don't think this jibes with using distraction for pain when that is also as much of a technique to help symptoms.

Distracting yourself might help with very mild pain but once again it implies that somehow the patient is responsible for the pain. Beyond a certain point this technique starts to diminish in effect.

I'm glad you are feeling better but just these two techniques I mention and there are plenty of others I could but I'm trying to keep this short to make a point, are simply poppycock!

I've had individual short term therapy with someone who worked with patients with chronic illnesses. She was a nurse practitioner who had worked with this population of patients, saw the reality/difficulty of the difficulties that are inherent with these type of illnesses and went back to school to also become a counselor. I certainly wasn't coddled by any means but at the same time it was very different than what you describe. The goal was not just symptom relief though that was a small part. The goal was how to work around your disability.

Edit

 

[Quemist]

Interesting.
Were you on sleep meds prior to this?

I was taking clonazepam but I stopped it during the therapy.

 

[cb2]

I felt like compared to most people in the group, my metrics were showing that the therapy *wasn't* working for me. 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

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!

 

[Strawberry]

I recommend just trying to increase your standing by twenty seconds or more each day and see where that takes you.

Thanks! I definitely am going to try that. I think I will try standing a little longer in the shower, as at least if it goes negatively, I can lay down for a few minutes before getting ready for work. It takes very little now to cause PEM, I will definitely be careful.

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?

 

[barbc56]

Couldn't get a multiquote after posting and then trying to edit.

they had everyone stop taking their sleep medications (no joke) and insist on no more than eight hours

While you don't want to become TOO dependent on sleep medications, if you have a true sleep disorder this is standard practice at least according to my sleep neurologist.

If you've only been sick for a year and I'm sure it was a miserable year, you can have a spontaneous recovery.

Please read these posts with an open mind as they really do provide insight why there's a very sound reason for some negative feedback. Hopefully and so far it has been, constructive feedback.

I wish you continued better health.

 

[duncan]

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.

 

[Strawberry]

Why would they wean you off sunglasses when it is a technique to help symptoms? To me that sounds like an implied way of saying these sensitivities are not real. I do this and find it helpful.

Hi Barb, I want to offer my opinion of my own experience. I am still light sensitive, but my tolerance is much higher now.

 

[barbc56]

Hi Barb, I want to offer my opinion of my own experience. I am still light sensitive, but my tolerance is much higher now.

Yeah, I can see your point and it's certainly food for thought.

It can be quite tricky, even by trained professionals, to determine when techniques like these provide more benefits than harm as well as when they are more harmful than positive.

 

[Old Bones]

Yes- sleep was an issue for most everyone in the program I was in.
To treat it in this particular program, they . . . insist on no more than eight hours in bed and wake up/sleep at the same time every night.

@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.

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.

Rather than consolidating my sleep as expected, sleep restriction resulted in an average of two to five hours of sleep per night due to increased adrenaline production. During my first sleep-restriction attempt, I fell asleep behind the wheel of my car. On the second occasion, I developed frightening cardiac issues.

Do take care as you resume the activities of your former life. Listen to your body, and trust yourself.

 

[Mij]

Taking a nap during the day definitely helps me sleep better at night.

 

[TigerLilea]

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.

Does it really matter what order it is? I use both ME/CFS and CFS/ME. It just depends on which one I think of first.

 

[duncan]

Does it really matter what order it is?I

It's an admittedly sloppy rule of thumb I've learned, so it's highly suspect. But it works pretty well for me. I can usually tell as an outsider to an ME conversation which side of the Atlantic a given perspective or exposure or approach arose.

 

[Research 1st]

If someone with organic CFS told me they had graduated from their untreatable disease with a PACE like therapy, I'd want to know if the ceremony was on April 1st.

 

[Esther12]

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?

 

[IThinkImTurningJapanese]

may be forced into what sounds to me like torture. I'm left wondering how many have been harmed.

Or will be harmed.

This is a very dangerous treatment, when your young and haven't had ME/CFS for very long it's more tolerable. I know because I've been through it (The same treatment, not this program).

It was easy for me to enter denial, I didn't want to be sick.

Reality hits hard though, ME/CFS doesn't care about your ideas.

 

[IreneF]

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 was deconditioned after breaking my pelvis, but it was entirely different from the experience of CFS. I didn't feel sick; now I feel sick.

 

[Art Vandelay]

This is a very dangerous treatment, when your young and haven't had ME/CFS for very long it's more tolerable. I know because I've been through it (The same treatment, not this program).

It was easy for me to enter denial, I didn't want to be sick.

I agree. When I first got ill, I experienced some improvement after a year. I used this improvement to get stronger, to force myself to sleep 'normal' hours, and to try to increase my stamina with graded exercise. I ignored the pain, insomnia and the signals my body was giving me because I was so desperate to get my life back and get back to work.

Indeed, I was able to return to work part-time for a number of years. However, I kept relapsing and each relapse was worse and took much longer to get over than the previous one.

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.

 

[A.B.]

A high intensity therapy like this would produce large nonspecific effects. I have some doubts that the effects are going to last.