I am hugely bothered and annoyed by the Mayo Clinic if they are offering this to people with ME/CFS. Sorry for the long post.
People who attend this Mayo group are there for 'pain rehabilitation'
'Rehabilitation' = the action of restoring someone to health or normal life through training and therapy after imprisonment, addiction, or illness.
Key word is 'after'
The following is from the Mayo Clinic -- re: the program mentioned in this thread --
https://www.mayoclinic.org/documents/mc1459-02-pdf/doc-20078829
With the support of staff and peers in the program, participants regain strength and stamina, and shift toward a focus on what they can do to regain control over their life again.
People come to Mayo Clinic's Pain Rehabilitation Center with many different types of chronic pain and conditions. Examples include:
- Chronic back pain
- Fibromyalgia
- Nonepileptic spells
- Chronic fatigue
- Headaches, including migraines
- Generalized pain or pain in multiple areas
- Abdominal pain
- Postural orthostatic tachycardia syndrome (POTS)
- Upper or lower body pain, such as pain in the chest wall, jaw, face, pelvis or joints
- Pain after removal of breast tissue from a breast (mastectomy)
- Nerve (neuropathic) pain
- Complex regional pain syndrome
I don't see ME/CFS mentioned here at all or anywhere in the 16 page pdf. What I do see are the words "Chronic Fatigue" which is NOT ME/CFS.
The rehabilitation program is focused on functional restoration. A cognitivebehavioral
model serves as the basis for treatment and incorporates physical
reconditioning, biofeedback and relaxation training, stress management,
chemical health education, activity moderation, and cognitive restructuring to
decrease pain catastrophizing and pain anxiety. Throughout the three-week
program, various types of treatment and therapies are presented to help each
patient achieve individualized goals in returning to an active and fulfilling life.
How does one functionally restore a person with ME. The same way as you functionally restore somebody with AIDS, Cancer, diabetes?
For illness, recovering from it or still ill, coping strategies are a good thing as long as they aren't used as a direct treatment of the illness in question.
I am saying rude words in my head right now --
Pain catastrophizing is the tendency to describe a pain experience in more exaggerated terms than the average person, to ruminate on it more (e.g., "I kept thinking 'this is terrible'"), and/or to feel more helpless about the experience ("I thought it was never going to get better").
I have had mild to severe pain every day since 1997 -- when I say my pain is mild -- it's mild. When I say it's severe -- it's severe. It's not an exaggeration. It's my experience. I own it. I don't feel helpless. What a load of shite pain catastrophizing is. To even suggest to a person in pain they are exaggerating is abusive.
Goals
The primary goal of the Pain Rehabilitation Center is to restore functioning and improve
quality of life for persons suffering with chronic pain. The program emphasizes the
discontinuation of opioids for the treatment of chronic benign pain and the return to a
fulfilling lifestyle.
Other important goals include:
• Return to regular daily activities
• Increase physical strength, stamina and flexibility
• Reduce/eliminate use of pain medications
• Minimize pain behaviors
• Learn stress management techniques
• Return to gainful employment (if applicable)
• Resume leisure and recreational activities
• Improve interpersonal relationships
• Reduce reliance on health-care professionals, with improved ability to
self-manage chronic pain
Pain is only one symptom of ME/CFS.
So if you are a patient with ME/CFS, they are offering to rehabilitate you.
Again,
'Rehabilitation' = the action of restoring someone to health or normal life through training and therapy after imprisonment, addiction, or illness.
Would a person with cancer, AIDS, leukemia, congestive heart failure etc be offered a program to restore them to health or a normal life via training and psychological therapies.
Naughty words again. Perhaps some CBT for acute anger issues is in order.
When I read the sixteen page PDF that I linked to at the top of the forum -- most of it is exactly what Quemist is saying.
This was a pain rehabilitation program.
See my comments above. Why is a patient diagnosed with ME/CFS being sent to such a program?
I think that deconditioning was PART of it. I am in NO way in recovery, just able to cope a bit better.
There are many books, programs etc that aim to help people 'cope' better with an illness.
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.
You said that you are "NO way" in recovery (above). But here you are saying trying some pacing was 'very good for your recovery'.
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.
See this is what, in part, CBT is supposed to be about -- helping people who need help coping with health related losses -- job loss, loss of social life etc. It's a slippery slope to start talking to people about 'pain behaviours'. Being in some of level of pain for 20 years, pain has become my norm. I have learned to ignore it when I can, distract myself etc -- All by myself. You can only do that up to a point though. But seriously, who gets to define that your coping strategies or pain behaviours are wrong or naughty. What are good 'pain behaviours'?
Oh, we were most definitely told to push through our symptoms.
Like to see them say that to a cancer patient.
'Cancer Patient' -- I am having severe pain. The chemotherapy is making me throw up, I have severe diarrhea'
'CBT Therapist' -- Just push through your symptoms
'ME patient' -- 'I have severe POTS, severe MCS, muscle weakness, light sensitivity, noise sensitivity, fatigue that is unrelenting.
'CBT Therapist' -- Just push through your symptoms
Even for a person with lower back pain as their only symptom --- being told to push through the symptom is a bit much. Pain is the body warning you that something is wrong. If it is caused by inflammation -- why push through it. How about an anti-inflammatory.
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.
I am sorry but what is the thinking behind this. So you take somebody who has the coping strategy of doing one thing, force them to do something that will cause them pain and discomfort. Why can't a person stand instead of sitting? Why can't a person use a heating pad to help decrease pain.
The tingling and numbness has improved but it does creep back occasionally. They had us do "distraction" techniques, which has helped. The brain fog is the most severe- memory is really failing and word-finding is terrible.
How is that CBT had an effect of decreasing a neurological problem which tingling and numbness is symptom of. Distracting yourself from numbness and tingling does not have any effect on the physiological cause of numbness and tingling itself. I really don't know how a person can cope with distracting themselves from pain, numbness, tingling when they are suffering from severe brain fog, let alone sit and learn how to do it. When I am having severe brain fog, I can't even take in what people around me are saying, I don't remember it five seconds later. I have okay days and I have crappy days when it comes to brain fog. Not too bad today -- just problems concentrating and blocking out any noise.
Try do your best to sit but don't resort to just watching TV. Don't lay in bed all day. Talking about your symptoms is very taboo (actually, being on this message board is technically a pain behavor). 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. Try not to grimace or hunch over, do your best to exercise good posture.
Sometimes 'sitting around' watching TV isn't something a person with ME can do.
Talking about symptoms is taboo -- Why? Seems like thinking about your symptoms is taboo too. Telling people to ignore pain and not go to the doctor. Everything about this program is actually not treating people as if their symptoms are real or important. It's one thing to help people cope with their losses caused by chronic pain, it's another to tell them to basically ignore it, don't get medical help, don't cry -- don't be a human and don't react your body. Actually, it seems like they are telling a bunch of children to behave themselves.
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
CBT is a 'psychological' therapy.
One of the basic things about CBT is that it is your faulty or irrational thoughts that are responsible for maladaptive behaviour and mental health problems. Since when is ME/CFS a maladaptive behaviour or mental health problem. Grieving over loss of job, friends, etc is not a maladaptive behaviour. CBT ignores or dismisses other factors that might be at play -- like genetics. CBT labels 'negative' thoughts as pathological/dysfunctional which isn't always true. Negative thoughts can be very productive and protective. CBT has been shown to be effective for anxiety and depression. It is not a 'treatment' for ME/CFS. Sure it helps with thinking about how to cope with things but you don't need a formal program for that.
The goal was for us to feel more comfortable in our bodies despite living with chronic illness. 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.
Where are the rest of the chronically ill people who happen to be average joes eeking out a living? Does chronic illness only wreck type A personalities.
It is clear that you are feeling much better psychologically. I am not sure why you put this thread in the 'General Treatment' forum because it's not any kind of treatment for ME/CFS itself. It's a psychological treatment designed to help people cope. I am not sure why all the posts about the program are a repetition of what is in the 16 page pdf. It's eerie how similar they are.