Poll Have You Tried CBT/GET, and If You Have - How Did It Go?

[Cort]

Andrew Lloyd recently proposed that the emergence of CBT/GET constitutes significant progress in chronic fatigue syndrome. Now we ask if you've tried either of these therapies and if you have, how did it go? (Your answers are anonymous, by the way.)

Please help others with your experience and place your fuller reviews here:

• Cognitive Behavioral Therapy
• Graduated Exercise Therapy
• Heart Rated Based Exercise Program

 

[Folk]

I did both when it was supposed I had FMS... GET made me worse I guess.
CBT made me think I had something psychological causing it for a long time, but I can't deny I improved socially and overcome some taboos with CBT and I'm greatful to that. I think a CBT with someone that really has knowledge (the thing is: does that exist?) about the disease could be helpful but not even close to a treatment... Don't think it should even be mentioned as one by the way... But we know some people feel guilty for been sick and that can be hard to solve. Professional help could be good. (I went to a "psychiatrist specialized in FMS/CFS" not so long ago btw... I could teach him a few things... hahah)

My health worsened over time... I think it was inspite of those things. I was the kind that left the exercise feeling great (when it was just "fibro") with a lot less pain and more energy... But it was that which caused my numb legs for a while (which I don't feel anymore thank god) and certainly what triggered my allodinya in the legs (perhaps also happened in the other parts of the body, but my illness was grew so gradual and slow I'm not sure what created what in the beggining)

 

[Cort]

I did both when it was supposed I had FMS... GET made me worse I guess.
CBT made me think I had something psychological causing it for a long time, but I can't deny I improved socially and overcome some taboos with CBT and I'm greatful to that. I think a CBT with someone that really has knowledge (the thing is: does that exist?) about the disease could be helpful but not even close to a treatment... Don't think it should even be mentioned as one by the way... But we know some people feel guilty for been sick and that can be hard to solve. Professional help could be good. (I went to a "psychiatrist specialized in FMS/CFS" not so long ago btw... I could teach him a few things... hahah)

My health worsened over time... I think it was inspite of those things. I was the kind that left the exercise feeling great (when it was just "fibro") with a lot less pain and more energy... But it was that which caused my numb legs for a while (which I don't feel anymore thank god) and certainly what triggered my allodinya in the legs (perhaps also happened in the other parts of the body, but my illness was grew so gradual and slow I'm not sure what created what in the beggining)

Thanks...I am not anti-CBT or what I think of as mind/body approaches to this illness. I think they can help - and in few people a lot. I think they are far from the answer for most, however. It's time for more research and new approaches to this illness.

 

[tatt]

strictly speaking I haven't been offered either but I ticked the first because I was kind of told it was the only treatment they would offer and I couldn't take one, I had to have both. Also that I couldn't possibly recover without it. Since I was there because exercise had made me practically bedridden I wuldn't have been able to do it anyway (no suggestion that they would come to me and it's a good few milles to travel - if I could get there I might not have been able to get back).

I've recovered more without CBT/GET than other people I've seen try it.

 

[Katie]

GET does not work for me. I do try and keep somewhat active by walking around the house, stretches, occasional Qi Gung-8 piece brocade a 12 minute medical exercise.
Re CBT: In the early days, 15 years ago, well-intentioned doctors put me on heavy narcotics due to the pain level at that time. I was on slow release morphine and fentenyl-up to 100 mg-enough to down an elephant. I am 5' and 105 lbs! So I was sent to a psychiatrist by my, then, new family doctor. The psychiatrist specialized in addictions. Can you imagine how I felt? I have a tolerance issue-that is my morphine receptors get "full" and I could "tolerate" high doses of narcotics without physical effects. Yes, it helped curb the pain, but still had levels of 6-10/10. I was a mess. Couldn't carry on a conversation, STM was gone. My psychiatrist slowly got me off all narcotics and Lyrica-which also caused terrible symptoms. I am now on cymbalta and cesamet-a cannabinoid, as well as a slew of supplements.
Did CBT help? For me yes, but it wasn't true CBT. I was taught a lot about meditation, diet etc. And yes, coming to terms with one of my parents.
Did it cure my ME-absolutely not. I'm just as sick as I was 15 years ago. However, I can think more clearly off narcotics, even though brain fog still happens.

 

[Nina]

I think it is a disservice to patients that physicians prescribe CBT ( I mean CBT????) and /or GET. It is akin to saying, "you the patient need to try harder, think differently"... which is of course absurd.

 

[AnneVA]

Not called GET, but PTherapist who understood EDS/POTS/NMH and gently worked my girl back to a level of strength and endurance she hadn't had for a few years. Slowly worked up reps., kept resistance low, weights very low, exercise to ONLY be done every other day as her body needed a day to recover. Exercise gradually got easier over 8 months or so. After a year, she could do the approved workout at a local gym, every other day. But if she overdoes it or works out every day, she WILL crash. So, it's Poke Along Therapy, not Push Along. Major improvement in stabilizing joints and reducing joint pain.

 

[Heidi]

I've researched CBT techniques and use them as a tool to help me maintain a positive attitude. I've found the techniques very helpful but they certainly haven't improved my health.
GET isn't helpful. What has been most helpful to me is special needs Iyengar yoga. The instructors in these classes are the best of the best. They are incredibly knowlegeable. The practice is adapted each individuals level of health. The poses are very supported. Even when I can't do much, yoga is beneficial. Poses that might feel like doing nothing support your stabilizing muscles, which are the muscles that deteriorate when you can do little. The inverted poses make it easier for your heart to get blood to your brain. With our reduced blood volume and reduced circulation to our brains inversions are good for us. The meditative aspects of yoga help us to attain a healthier balance between the sympathetic and parasympathetic nervous system. We tend to be overbalanced in the sympathetic or "fight or flight" side of the nervous system. With improved knowledge of optimal body postures I have softly and gradually improved how I sit, stand and move. When I am healthier I gently increase what I do in yoga. Yoga helps me in every aspect of my life.

 

[TigerLilea]

I've never been offered CBT or GET, and if I were, I would definitely walk away from that doctor if it were being offered as a cure.

 

[Cort]

Not called GET, but PTherapist who understood EDS/POTS/NMH and gently worked my girl back to a level of strength and endurance she hadn't had for a few years. Slowly worked up reps., kept resistance low, weights very low, exercise to ONLY be done every other day as her body needed a day to recover. Exercise gradually got easier over 8 months or so. After a year, she could do the approved workout at a local gym, every other day. But if she overdoes it or works out every day, she WILL crash. So, it's Poke Along Therapy, not Push Along. Major improvement in stabilizing joints and reducing joint pain.

That's good! It's amazing how sensitive our system is....Her story reminds me of Dan Moricoli except he went all the way to health - one of the exceptions. But good for her for developing some basic fitness that reduces her pain...

 

[AnneVA]

That's good! It's amazing how sensitive our system is....Her story reminds me of Dan Moricoli except he went all the way to health - one of the exceptions. But good for her for developing some basic fitness that reduces her pain...

Cort, she failed PT more than once as they didn't understand the exercise intolerance she was dealing with. She begged me not to take her to a 4th PTherapist. But we went and 9 months later, with some braces on, she tried some surfing with an understanding instructor. We limited her to 1 hour as over that and her muscles would be getting tired and then she'd be prone to injury (hypermobile so she depends on strong muscles as tendons/ligaments are too loose). She will probably never be able to do a "normal" workout. Pace. Listen to body. Hard for a teenager to do when they start feeling a little better.

 

[Lyla Arthurs]

I was offered counselling and CBT when I was first diagnosed. I turned it down because as far as I was concerned it was more important to focus on the physical aspects of ME/CFS with medical treatment. Knowing now what I do about the condition ie: there is swelling in the brain I feel I made the right decision. I understand how mental positivity can help etc and I do meditation and hypnotherapy myself. However I think its just doctors not paying attention to the realities of this illness by telling people that its in their head. Yes it is in my head because my brain is swollen and no amount of CBT or Counselling is going to fix that.

 

[tatt]

A;though I would not do GET - have no faith in the practitioners - I have read that weightlifting is the best form of exercise for those with ME and I do sometimes get out a couple of cans and do some work with those. When I can I walk or use a semi recumbent exercise bike but with a heart monitor to avoid overdoing it. I find yoga breathing exercises helpful when my brain is too wired for sleep.

CBT may be useful for some people in learning to accept the illness but I've been ill a long time, I didn't need it. In the UK it seems to me they use it to preach that you won't get well, there is nothing your doctors can do to help you so stop bothering us. Doctors here go into medicine to cure people, they don't like to see those they can't help and who remind them how little they still know.

 

[JennyJenny]

"Forgotten Plague" is coming out, the CDC archived the old CFS Toolkit, the IOM is not recommending GET or CBT and the Citokine research used CCC and CDC diagnostic criteria for EACH ME/CFS patient. The Oxford and other criteria rely heavily on a link to depression. These clinics and researchers and writers around the world know their time is up having a sick and twisted grip on an illness that should have NEVER been theirs to abuse.

As patients and advocates and writers we must make it clear the CF is NOT CFS. CF is a symptom of many illnesses and many benefiting in the CBT and GET have CF, NOT CFS.

Even the NP at my Rheumies office kept saying CF but I was so tired and had to do so much that I could not think to say I was disabled with CFS and although they are my new Rheumy because I moved I would think she would not have an issue SAYING CFS. It seems too many people with CF were diagnosed with CFS and many with CFS with diagnosed with depression.

 

[Lifeonerth]

Cort- FYI, I tried to respond to the survey and it only allowed me yo choose one option. I have tried both CBT and GET but was only able to reply about my experience witht one or the other. I am on an iPad with the latest iOS if that makes a difference.

CBT did noting for me. My psychiatrist had no prior experience working with people dealing wit physical illness, especially chronic illness. I have done therapy before in my life for unrelated reasons and consider myself fairly self-aware. She had nothing new to offer me. She even said my problems were physical, not psychological and she helped me get my SSDD.

GET made me worse. I was a competitive athlete for years and continued a regular workout regimen including cardio and strength training for many years while my sickness was still undiagnosed and was still less severe. People said I looked like a fitness model. My illness has progressed steadily and sped up its rate of progression such that I have been bedbound for about 5-6 years now. Before that I struggled through with partial function undiagnosed and untreated for almost 20 years. Perhaps if I had been diagnosed and treated (for the POTS and Addison's etc) earlier and told to rest and pace etc. things would have gone differently.

It should also be noted that I have recently been diagnosed with mitochondrial disease and it looks like I also have MADD (Multiple Acyl-CoA Dehydrogenase Deficiency). Dr. Lapp believes that ME may turn out to involve a form of mitochondrial myopathy and is paying close attention to my workup (in progress) with a mitochondrial geneticist/metabolic disease specialist. We'll see what happens. Wish me luck, I am about at the end of my rope! Best wishes to all!

 

[PhoenixLeo]

I've had various forms of counselling and psychotherapy since I got ME/CFS over the years. Some of it has been useful, some of it not. British NHS CBT directly for the ME was really awful. Left me feeling depressed, frustrated and disempowered, whereas other forms of counselling & psychotherapy has been useful and empowering. CBT is pants for ME/CFS. The most beneficial techniques were all NLP/EFT based and regular counseling. I think the problem is the CBT based therapy has an agenda (at least in the UK) and that is to blame the patient "you are thinking about your illness wrong, it's your fault that you don't get better" etc whereas NLP just deals with issues in a non-blame way, you're just observing and retraining. It's a subtle difference, but it makes ALL the difference. I've also found mindfulness meditation good for pain reduction. One session of NLP is more effective than years of CBT. I'm trying GUPTA training at the moment on DVD, which is one of the NLP types and have found it useful and empowering - a way to retrain my amygdala response which GUPTA believes has been damaged due to illness and inflammation in the brain. I don't particularly see it as a cure, but a useful tool in my recovery arsenal. I think it's helping, and unlike CBT, it's not doing any harm.

I was still able to work part-time when I tried GET. I followed all protocols to the letter. I could not keep up and basically had the worst relapse ever. I have not been able to work since. It's taken about 6 years to recover. It was the biggest mistake I could have made as it pushed my ME into severe/bedridden levels - for several YEARS. It's put back my recovery by miles. Pacing is by far the better option to GET. I've managed some stabilisation and improvements from pacing, diet, some supplements (omega oils, magnesium, coQ10) and lifestyle adjustments and NLP. TCA (Traditional Chinese Acupuncture) Acupuncture was also useful and Smile QiGong, but I can't do that much still and do it sitting down. The challenge with ME/CFS is finding the things that work for us and dropping the things that don't. Lots of small changes that add to my wellbeing seems to be a good recovery strategy for me at the moment. Things have plateued and making gradual improvements. GET/CBT definitely made me worse so I personally would not recommend CBT or GET, but I would recommend trying NLP & pacing has helped enormously. They kind of sound like the same thing, but they're not.

 

[TigerLilea]

My problem with programmes such as Gupta's, NLP, LP, is the secrecy behind them. If the programmes work so well then why aren't they doing everything possible to get it out there, instead of telling people not to share the programmes with others. Why aren't they posting videos on YouTube for everyone to try. They aren't because it is a fraud. My personal belief is that if anyone's CFS is getting better using one of these methods then they were misdiagnosed to begin with.

 

[PhoenixLeo]

My problem with programmes such as Gupta's, NLP, LP, is the secrecy behind them. If the programmes work so well then why aren't they doing everything possible to get it out there, instead of telling people not to share the programmes with others. Why aren't they posting videos on YouTube for everyone to try. They aren't because it is a fraud. My personal belief is that if anyone's CFS is getting better using one of these methods then they were misdiagnosed to begin with.

I chose the Gupta over LP as it was £114 for a 5 dvd set vs £600+ for a 2 day course for LP (+ accommodation & travel costs! completely out of my affordability) and Gupta gives a full money back guarantee for the DVD after 6 months if it doesn't work for you and I know someone who it didn't work for and they got their money back, so I feel I've got nothing to lose. As you say LP is very secretive, another reason I didn't choose it, but if it works for people, good for them. As diagnosis is so poor and misdiagnosis so common and treatments lacking, we are forced to do the best we can with the resources we have. I just hope I'm lucky enough to hit on something that works for me. As I said in my message, I don't see it as a cure, but a useful part of my arsenal to enhance my wellbeing in all ways possible, to give myself more of an edge, more of a chance of recovery. I have seen psychotherapists since I first got ME, and all gave me a clean bill of mental health and confirmed ME is physical, but it hasn't stopped me using useful techniques that have helped me. I'm 16 years in to this illness. I will use anything I feel may be useful for my recovery - testing for and treating underlying conditions, optimum nutrition, supplements, pacing, NLP, osteopathy, acupuncture, meditation, lymph massage, good sleep hygene, avoiding stress, finding small joys in simple things... it's just one part of a wider puzzle we each have to solve for ourselves. I just want to put my body in the most healing state I can - to help it along in any way possible. If I were rich it would be easier. CBT & GET did not do it for me - GET actually made me seriously ill, hence my sharing my story here. I believe GET is actually dangerous for people with ME, it was certainly the biggest mistake I made. CBT was awful, but I have found NLP useful and empowering, so I have it as part of my healing arsenal and share it as it may help someone else. I am doing something right as I've got myself out of severe ME and back into moderate. I can sit upright, listen to music, type on my computer. I even went to the cinema first time since Anger Management. It's taking YEARS but I'm moving in the right direction. I don't think it's any one thing, but a combination.

 

[Gabe]

I had been to a psychologist earlier in my life, before my CFS symptoms started. When CFS came along, it took two years for me to get a diagnosis of CFS. Every single doctor I saw - primary care, neuro, endo, rheum, etc. - all suggested it was a psychosomatic disorder, something I vehemently disagreed with, so I resisted CBT in the beginning, and focused on physical therapy. Every time I left the physical therapist I was in more pain in a larger area than when I entered. This was on two separate occasions, for two months each. It was literally hurting me and making it harder to function, so I stopped. Under increasing pressure from my doctors and family, I returned to my psychologist that I had established a good relationship with and enjoyed talking to. One of the first things he said was: "This sounds like a physical problem. Unless you need to talk about it, I don't think there's anything else I can do." Family was NOT happy to hear that, so I tried two other psychologists. The first one told me to go to church. The second one tried to... cure? me with sunglasses that flashed lights in your eyes. At that point I put my foot down. No more BS psychologists wasting my parents' money when I already knew what I could expect from therapy, and knew they couldn't do diddly. Eventually I found a neuroimmune specialist with experience treating CFS who confirmed the diagnosis. For a while, her recommended treatment plan was working. I felt more active, less pain, less flu-like symptoms, etc. But then I tried to exercise... Basic upper body strength exercises. 1 set, 5-10 reps, with 5 pound weights. No, I'm not missing a 1 or 2 in front of that. Immediately after, everything felt okay, so I went to bed, no problem... The next morning, I felt like death. Excruciating pain in my neck, shoulders, upper back, and arms. Extreme fatigue, sore throat, tight chest, irregular hear rate, headaches, dizziness, oh the list goes on. Oh, but since I didn't pay someone who knows nothing about my disease to watch me exercise, I MUST have been doing something horribly wrong... That's bull. How many instances of exercise leaving me bed-ridden does it take to convince people that, even at extremely low intensity, EXERCISING HURTS ME.