You, ME and CBT

I remember when a doctor of mine suggested I incorporate cognitive behavioral therapy (CBT) and graded exercise therapy (GET) into my treatment plan. She might as well have said, “Hey Jamison, I’d like you to try smoking cigarettes to treat your symptoms. Start slow, maybe a few a day, but your long-term goal should be to smoke at least a pack a day. Sound good?”

Now if you just said, “Wait, there’s no way a doctor would ever suggest a treatment that’s as harmful as smoking cigarettes,” or something along those lines, let me tell you, that comparison is not hyperbole. At least not as it pertains specifically to GET. On the other hand, CBT doesn’t seem to be harmful, but I’d classify it as a method of coping with the byproducts of a horrible disease rather than an effective way of treating that disease. 

If you have never heard of CBT or GET (don’t worry, most people haven’t), or why they are so controversial (and often harmful) pertaining to MECFS, I recommend you read a pair of recent articles (links embedded below) outlining the debunking of most, if not all, of the evidence which previously suggested the two were effective treatments for MECFS. Perhaps the best example is a 2011 study from the Lancet, a highly regarded medical journal. The study, which is widely referred to as the PACE trial, was recently disproved by a swarm of independent analysts, after a court ordered the study’s raw data be released to the public. 

While CBT and GET were only two suggestions made by my doctor, and she compiled a long list of other treatments which included supplements, pharmaceuticals, and nutritional ideas like organic juicing, CBT and GET stood out like a pimple on an otherwise pristine forehead. 

This doctor of mine arrived late to the party, or so to speak. That is the incredibly sick person party. So I’m going to cut her some slack, especially since my experience with the last doctor didn’t turn out well. Besides, I can’t say it was the only time these treatments have been suggested to me. 

A family member of mine who works in the medical field suggested both GET and CBT, as did a good friend currently attending the top medical school in the country. It just shows how ignorant current medical professionals can be, and how the fault lies in our schools of medicine. 

In the six years that I’ve been sick I have tried both CBT and GET. I’ve worked with therapists who swear by CBT and doctors who insisted GET was the key to my recovery. I went from deadlifting more than 400 pounds when I was healthy to, as a concession, doing light yoga, going for short walks, and occasionally riding my bike. While it’s hard to say if these things were harmful in the long run, one thing is certain: they didn’t make me better. They obviously did not keep me from becoming bedridden. 

In my eyes anyone who thinks CBT or GET is an effective treatment for MECFS should walk up to someone with HIV/AIDS or Parkinson’s — both horrible diseases — and try telling them graded exercise and cognitive behavioral therapy will improve their condition. MECFS can be just as severe as these illnesses. I can’t imagine exercise or cognitive behavior having any lasting benefits for someone dying from HIV/AIDS or withering away with Parkinson’s. This, of course, is my opinion, which I will admit is based on limited knowledge of the aforementioned illnesses. 

The truth is, however, CBT and GET have been proven ineffective, if not counterproductive, at treating MECFS. And anyone who is at all skeptical may want to read the correct information on the topic before recommending them to a sick person. 

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63 thoughts on “You, ME and CBT

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  1. I have always said that telling ME patients to exercise is like treating diabetics with sugar. “Just go eat some cake… and work your way up to eating spoonfuls of pure sugar.”

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  2. My insurance company forced me to go to a rehab consultanting company run by a psychotherapist. Having read about PACE & the situation in the UK, I was terrified. When I got the letter telling me about the “referral”, I called a friend sobbing because I was so afraid that they would force me to act beyond my limits or cut off my ltd claiming I wasn’t cooperating.

    I ended up using a disability lawyer to fend off their attempt to direct my treatment. My lawyer knew exactly who this company was & what they were all about. I was angry that I had to pay someone to avoid inappropriate “treatment” but grateful I dodged the bullet.

    I cannot wait for the day that the medical community uniformly agrees that PACE is an utter travesty of science and that the only thing left propping it up are the egos of the doctors that ran the study.

    Keep up the good work on getting the word about CFS out there Jamison!

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  3. It is unfortunate that people we should trust when it comes to our health are saying two very different things. Some are pushing certain treatmetns because they are in cahoots with the pharmaceutical companies. It is sad and cruel to play with human life to benefit from it.

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  4. Thank you for your blog Jamison. I agree with every single thing you have said. I have severe M.E, and was made this way by doing CBT through the PRINCE secondary trial (which was also graded exercise through the back door), because I was told to increase the minutes of walking I was doing week on week, and the booklet I was given, was all about not worrying about symptoms and that I had apparently had “nothing to lose”. Anyway, I’m now predominantly bedbound and can’t sit up or speak very much at all. 😦
    They do such horrible things to us – in my case – in the name of research

    Liked by 1 person

  5. Luckily, I found out about the PACE Trial before my son was offered CBT and GET. So I have saved him from becoming worse. He’s housebound at the moment, and we take each day at a time. He’s 17, and has such a thirst for learning (mainly Space science) so often has me bewildered with his knowledge. He has a great sense of humour, and we laugh all the time. Always stay as positive as we can. ‘It is what it is’ attitude, while we wait… (and wait!!) for the UK to catch up with the real world and climb out of it’s ‘psychobubble’
    Jamison, loving your blogs. keep em coming.
    So pleased you are feeling a little better. Let’s hope it carries on.
    Take care and keep smiling 🙂

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  6. I’ve been through being diagnosed with ME/CFS and have had it for two years so far. The advice was to send me to a psychologist and to gradually increase exercise. The exercise made me feel worse and was shocked when the psychologist told me I didn’t want to get better! I had a full time job, brought up two kids on my own and did voluntary work as well as being extremely sociable. Rest is the only thing that helps and accepting that I actually have a valid illness. That at least helps psychologically. Only one doctor has understood the illness and said to rest and that I had been doing too much. I’d like to know is other people has as varied symptoms as mine are: exhaustion so bad you would do anything to sleep and not move; moving is tremendously hard and takes every ounce of strength; pain that moves round the body from join to joint; sweats day or night; freezing cold even on a hot day when nothing seems to warm the body; feeling sick; hip/knee joints giving out; headaches/migraines; memory loss; rashes. I really feel like my body has been poisoned even though it hasn’t been. I find talking to people/visits from people exhausting and have no desire to mix or have an evening out. From only needing 4/5 hours sleep at night to being awake for only 4/5 hours a day. And depression which I think is caused by the illness.

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  7. My partner has ME and lupus. Her life has been turned upside down over the past two years. She was a really social person, doing a PhD, would be out with friends most evenings and was a real social bee. Her life is the opposite now, stuck in bed, in great pain, its a victory for her if shes able to sit in the living room for a couple of hours. The doctors in the UK have been shite. She was doing a CBT course, which seemed to be getting her to do more exercise gradualy, when she had been slowly getting better before hand, it made worse. I will be by her side forever and a day and try and make things easier. The doctors suggest it’s psychological. But its not. The pain is real. Why would anybody who was going places in life decide to do this to themselves. Somedays I find things difficult I work full time and do all I can to make things better. But I find my own health taking a hitting from it. But i try my best to keep a smile. My girlfriend is the loveliest person and this disease, this crippling horrid illness is sucking her life away. I hope one day the medical community in the UK will take this more seriously and stop following horribly discredited advice on how to treat it. Every now and then I find myself in tears due to the stress of everythinh, which is nowhere near as bad as when my partner is in tears because she cant get out of bed due to the pain she is in. This disease doesn’t see colour, sexual orientation etc etc. It just takes away lives and I hope one day it will be taken as seriously as other illneses.

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    1. martynpost have you heard of Dr Sarah Myhill? She is a dr, living in Wales, specialising in ME/CFS whose website is a comprehensive self-help directory for treating the disease. She can’t take on new patients as she has a full complement (which just goes to prove how prevalent the disease is!) but seh offers loads of tests and will assess the results for you and recommend treatment based on those results. If you would like to see her website and also join her page on Facebook the links are http://www.drmyhill.co.uk and Support for followers of dr myhill’s protocol. Good Luck

      Liked by 1 person

  8. I like the HIV/AIDS comparisson however morbid it may seem. It’s what I think of when my doctor prescribes me supplements and vitamin injections. Evidence points to ME being a virus (at least in my case – classic viral onset) and anyone who’s ever had so much as a cold knows you cannot juice it away.
    How so many intelligent individuals (practicing physicians) can be so narrow minded is beyond me. And to top it off, there is enough good ME research on the internet to educate an army of doctors but they can’t be bothered. After two years with this disease I seriously wonder if the Hippocratic Oath somehow excludes ME patients…

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  9. I had CBT with the lady who literally wrote the book on it. She was lovely, really lovely, but I laughed when she asked me to ‘examine the psychological root of what might be causing your problems.’
    Thankfully, 4 years later I found that it was indeed inside, inside my gut where I had two different chronic bacterial infections, inside my adrenal glands where I had some dreadful hormone disruption and inside my entire body where I had blisteringly low levels of B Vitamins. What they tried to do with me, I had GET as well, in a year, I’ve achieved in 8 weeks of adrenal hormone supplements, B vitamins and good bacterial tablets.
    I’ve had to pay for tests, but compared to a year’s treatment at a ‘specialist’ ME/CFS centre they would be entirely affordable on the NHS or other healthcare schemes, I’ve had to pay for supplements, which, again are low priced compared to the CBT/GET I had. I never understood why people who said they genuinely wanted me to get better wouldn’t listen to me when I asked to see a nutritionalist, I still don’t.

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  10. Exercise is so highly worshiped in our society as a cure all that I finally gave in to the pressure and enrolled in an aquatic class for fibromyalgia – i was feeling an increase in energy and thought maybe my body could handle it – wrong! Three sessions and I was knocked back – just trying to build up again. I love your cigarette analogy, and may use that. I hear over and over again: “It’s just that you used to be so physically active; don’t you want to build your body up again.” Ignorance is rampant. Keep writing – a much needed voice.

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    1. Thanks VJ. It’s generally true that exercise is considered beneficial to any condition. As a fitness trainer I wonder what I would have done if I had a client with MECFS or fibromyalgia prior to getting sick myself. I doubt this would have ever happened bc we don’t usually seek trainers but who knows. I like to think I would have turned them away but truthfully I probably would have tried some sort of exercise with them. Thanks for reading!

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  11. nice writing dude 😉

    with some alternative meds and abx the bugs fiiinally left my system, leaving some metabolic havoc in all the places where there’s lots of nerves, fixing this with thinking or exercise would be funny if it wasn’t so sad

    Liked by 1 person

  12. Hey….it’s the weirdo from the book review section. I liked the part about the graded smoking therapy….y’know, we’ll work you up to a pack a day in 6 months. Fabulous!
    I was about as active as you at 16 when I got sick, I was a “running fool” as some in Forrest Gump might put it.
    26 years later, I’m lucky if I can make it up three flights of stairs.
    Glad to have found your blog.

    Liked by 1 person

  13. So pleased you followed me on Twitter, so now I have found your blog. Very interesting post. I’ve had M.E. 22 years, now mainly housebound, lost virtually all independence. I was very slowly improving, no meds, just loads of rest and listening to my body. Took years, but was managing to get up and dressed everyday – w hoop whoop! and was beginning to drive a little, getting myself feeling like me slightly, that was until my doc sent me to a local gymn for GET. I managed three visits. Totally bed bound for months and back to square one. That was many years ago now and I’ve never recovered back to where I was!! I agree wholeheartedly with your feelings on this. I feel I have been robbed of even more years having followed my docs advise, but at the time I was told it was considered the best form of treatment! Quite the opposite for me.

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  14. I always want to roll my eyes at the insistence that I try CBT — it’s not that I don’t think it would help at all, but I have to look at it as an energy thing.

    Is this the most worthy, rewarding place to spend my really precious energy? Probably not.

    Working on bettering my situation despite my limitations is way more rewarding, and will go much farther in improving my mindset than exhausting myself talking to a stranger will.

    Great post! 🙂

    Liked by 2 people

  15. So I’ve been sitting here trying to find something meaningful to say in response to your fantastically accurate and well written article. However, I’m out of any sort of fulfilling comments to say…so, thank you for being another great voice in our forever battle and for making others aware that it really isn’t just that simple. I live in hope that real research will happen and one day, in years to come, we may, with any luck; begin to receive our long awaited answers. I’ve only recently jumped on this blogging technology and I look forward to reading more of your blogs. 🙂

    Liked by 1 person

  16. I don’t pay for my healthcare (U.K.) so a lucky in that respect. However the common medical opinion in the U.K. is to treat MEcfs as a mental health issue so seeking help it is a worrying experience.
    I did go to the doctor after basic bloods and was merely offered a ‘nothing I can do’ shrug. After pushing I was offered an ill advised rheumatology apt and a support group located 1 hour away, which is too far for me to travel. I would like support but I’m not sure about sitting around with other sufferers moaning about how ill we are with no end in sight! Might be more depressing than helpful. The things that have helped me (and my sister who is also mecfs) are:

    Acetyl-L-Carnitine supliments. Positive effect on energy levels and symptoms.

    Astralagus. Chinese medicine taken in supliment form. The first approved drug for ME (Argentina) is derived from this. It has really helped my cognition and general ‘lifeforce’.

    Cannabis. In tiny amounts. I make a cigarette using loose herbal tea and weed and smoke one or two drags most days. Huge pain and mood relief. You must research as different strains do diff things, some energise, some sedate and so on.

    I’m not cured and others may have tried these and not found them helpful (I’m pretty sure it’s not a one size fits all illness) but thought I’d pass on my aids that have improved my day to day.

    Going vegan from vegetarian has helped with hives and irritation on skin and digestive probs (and obviously a clearer conscience!) But I have family who food shop and help me with cooking as it’s all from scratch.

    I want to try juicing but can’t face it quite yet. please write about if you try it! Good luck all x

    Liked by 1 person

    1. Hey Leah, Sounds like you have had some successful treatments. Which is remarkable considering the resistance to the condition shown by some doctors. I’ve just been doing a small juice every day about 8 oz.

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  17. Tienes razón, CBT, es completamente inútil y el ejercicio físico progresivo, es incluso peligroso para nosotros. Respecto a los médicos que no lo saben, me pregunto siempre: por qué no aprenden acerca de todo ésto?, acaso no desearían poder ayudarnos?
    Un saludo, Jamison.

    Liked by 1 person

  18. Jamison-you are so helpful to so many people suffering with ME/CFS. I am struck by the depth of your clarity and knowledge, and your generosity in sharing it. Keep on keeping on. Thank you!

    Liked by 1 person

  19. Hi Jamison, Aren’t you going to the Open Medicine Institute? I thought the docs there were specialists in CFS? I’m glad you’re at least feeling well enough to communicate and entertain the rest of us with your humor. Laughter really is one of the better medicines.

    Liked by 1 person

      1. That’s how it is with my doc too – she knows very little but is usually willing to order any test/treatment I read about. The one she balked at was medical mariuana, but I live in CO so eventually got it on my own. Unfortunately had a terrible reaction to THC and the CBD does nothing. Have you ever tried it? (if I’m asking too many personal questions ignore me.) My doc’s mom’s best friend, who was a real “ball of fire” suddenly came down with this, so she believes and is sympathetic – that goes a long way, doesn’t it? I was disappointed the PA at Stanford didn’t order any immune tests so between what Dr. Teitelbaum suggests and others I’ve heard about, am going to see if she’ll order those and save a trip to see Dr. Montoya – from what I can tell, the treatment would be an antiviral, anti-inflammatory and maybe immune modular.

        Liked by 1 person

  20. My present doctor prescribed medication for sleep that is for epilepsy. The possible side effects are everything I am now experiencing. Also may cause dizziness and stumbling. She is very intimidating and so I have been buying the medicine but not taking it. I feel so bad about myself but I just cannot bring myself to take it. I am terrified of doing anything that might make me worse. I am just too sick to even try to tell her. Insomnia is also a side effect!?! I was also told to try CBT and I did but it made me way worse. I kept going until one day the therapist asked me “if you got better would you even know it?” That was my last day there….

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    1. Hi Gloria. I too live in fear that a medication will make me worse. So risky. I know it’s hard to deal with doctors. I would either find a different one, or if you’re up for it, set her straight. Gather a bunch of articles and books and get nasty with her. Tell her you’re paying her for a service and it’s not to be intimidating. Good luck!

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      1. Thanks Jamison! I hate feeling so weak and helpless and stupid! I think I just needed that encouragement. I thought I might lie and tell her the medicine made me too dizzy but that is a chicken way out. Thank you by the way for those articles you cited. I for one know CBT makes you much worse. I had such high hopes for it but when I failed it just made me feel more down on myself. That is the very last thing we need! Thanks for your encouragement to be braver. It validates my concerns. I may not be able to do it. I do need a different doctor but recently when I had to go to the hospital all the doctors there made me feel like I was just having anxiety attacks which I was because I thought I was dying. It gets so you just don’t know where to turn for help.
        Sorry that sounds hopeless but it is the way it feels. I know you know all this too.
        Maybe soon someone will figure this stuff out and find a way to help us that actually works. Thanks for taking time to talk with me. I hope your day is a decent one.

        Liked by 1 person

        1. Hey thank you! And you can always leave a comment here if you need encouragement or motivation. I think your doctor is either lazy or misguided and in either respect it’s probably best to just move on.

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  21. A friend of mine told me :” have you ever tried yoga ?”. Your explanations and similitudes are great as everyone can understand how terrible for us is to receive some worsening suggestions !

    Liked by 1 person

  22. Ive recently been told i have CFSME, I went to doctors not my normal doctor and say to him that am sore what does he suggest and he told me the same light exercise, told him but am sore and he said it will help and take mild painkillers. I never went to gym as previously when i did this i was in agony for days after it.

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