how have you got on with the structured exercise cfs clinic get you to do?

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I recently went to the cfs/me clinic. But i wasnt toi impressed the first lady basically told me its all in my head due to my mental health.. So i was reffered to phychologist and a physio psychologist for the GET therapy?

She started me off with a 15 minute walk everyday gradually increased.. They say if u do this u build stamina and then you wont be basically ill anymore you have to get up at the same reasonable time everyday.. Go to bed at a reasonable time..

But doing this walk everyday sometimes wasnt even possible for me as i can spend days in bed not getting up.. But then im told well u will never get better unless u do this everyday and build up your stamina..

I feel like they just look at me see that im over weight and think lazy cow.. No wonder she gets tired.. But i only been over weight since getting this illness as i barely move most days!

Im tired of being tired and just being in bed!

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  • Posted

    Yeah. Spent ages doing GET because they lied to me about it's efficacy and the role of deconditioning in perpetuating my symptoms. Total waste of time. No evidence that GET is any more than a laborious placebo, leading to nothing more than minor imporovements in self-report measures, without being able to improve fitness.

    Worth trying to get evidence of all the claims they make to you, as it seems a lot of clinics are still quite actively misleading patients. If you start asking tough questions then they'll probably clam up a bit, but getting a recording of them explaining themselves to a confused patient is more likely to be revealing. There's a video called "how's that recovery" which illustrates some of the spin around GET/CBT for CFS.

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    • Posted

      Having said that I'm not anti-exercise, which does have benefits as well as costs for everyone... GET is totally misold for CFS, but we can all, as individuals, make decisions about what sort of/ammount of exercise works best for us.
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  • Posted

    hi january. i'm horrified to hear that u were subjected to this abusive drivel from this so called professional. this person is NOT a Dcotor, so DO NOT have remit to give diagnosis i.e. ''it's all in ur head'' - most unprofessional.

    in respect of GET & PACE progarammes: the outcomes are v. mixed. it seems to work ok for some ppl by helping them, to more efficiently manage the FINITE amount of energy their body can make in a day. for others (those who were pushed to do too much too soon, or mis-judged their own abilities) had bad outcomes - they got worse.

    i don't know how severe ur ME/CFS is, or how much exercise u can do without compromise i.e. having repercussions for over doing it. however, starting off with a 15 minute walk sounds a lot to me. they should find out what ur 'baseline' mobility abilities are i.e. how much 'exercise' u can do WITHOUT getting fatigued or generating delayed fatigue first and work from that premise.

    my advice would be to do the amount of 'exercise' that your body feels 'comfortable' with. that would be, the amount that does not generate 'delayed fatigue'. i had a similar situation & ended up in relpase for about 6 months. i now tend to 'listen' to my body and respond accordingly. often that involves ME telling the professionals what i can and can't do, eventhough it's energy depleting doing it.

    all good wishes with the course.

    Caitlin

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  • Posted

    That's so shocking january; if I was you I'd like to exercise by punching her in the face repeatedly! cheesygrin

    I had a much kinder person, an occupational therapist, who taught me to do gentle yoga on the bed but it didn't work because I didn't have the drive required for it. I ended up more stressed and in relapse, and beating myself up because I couldn't keep it up.

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    • Posted

      GeorgiaS. pls. don't beat yourself up. it's just our body's failing us rather than us failing our bodies. but i know the debilitating feeling when we feel we have failed yet another intervention.

      best Caitlin

      p.s. loved ur proposed exercise for january - had me in stitches?

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    • Posted

      Lol Glad you like my exercise therapy for january, we could make it a group project perhaps? One thing that I can still do is laugh and I don't need graded exercise for that. razz

      Thank you for reminding me to try to stop judging myself by other's standards or what I can't do. 

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    • Posted

      Hi GeorgiaS. when u loose the day job (ME/CFS) there's a place waiting for u in the 'Comedy Stand Up 'arena? think of what u could do with all that obsevraional material gleaned from those CBT/GET protagonists.............? perhaps 'newzoids' would be interested?

      Caitlin

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    • Posted

      I'll see you there then Caitlin! Well it was your idea. cheesygrin

      What's wrong with doctors? They doct know what they're talking about.

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  • Posted

    It's people who try and foist this sort of drivel on us that have set the research and treatment of ME/CFS back to the dark ages. Ignore what they have said totally and refer them to The WHO definition of ME/CFS if they insist on trying to say that you're suffering from a psychological illness and complain to the Ombudsman if they persist... Just Google ' Parliamentary and Health Service Ombudsman.'

    Try and find a local ME/CFS support group near to you, they will give you the sort of real advice that you are looking for.... and if you can't ask here if anyone knows of one in your area.. With a bit of real help we can all improve our lot.. smile

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    • Posted

      And see if there's a local ME group near you. I've had loads of help from my local ones. razz

      Even my local MP helped me to get DLA.

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  • Posted

    These CFS/ME clinics are a insult to those of us with this VERY REAL PHYSICAL ILLNESS CFS. I was years prior to diagnosis a semi professional triathlete, i want nothing more than to go back to the gym, go running and swimming but i physically cannot, the notion this is all in my head is insane, and if exercising gradually was the cure i would be cured by now, it's my experience that exercise although important can be damaging to us folks with CFS, i cannot get my heart rate over 100bpm or i will feel really ill. It's a torture illness because i know most people you deal with believe it is all in your head, which makes it that bit more worse.
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    • Posted

      I read something very helpful the other day. Unfortunately I didn't save the website. Basically it's that graded exercise and CBT are no longer considered to be appropriate treatments for people with ME.
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    • Posted

      Difficult for CFS clinic workers to justify their jobs to NHS commissioners is their honest about the value of their treatments.
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    • Posted

      Being treated like a human being would be a start? Having care at home if you need it to help you get better etc?
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    • Posted

      If phramaceutical companies invented a drug that they could get on research outcome to prove, which are often manipulated, the drug could be pumped out to ME, fibro patients and we'd all be hearing about it and jumping on board, even if it was proved to do nothing or even make us worse.

      My point is that the reason we're so neglected and treated like hell is because they can't make money out of us.

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    • Posted

      Thing is if they had an effective treatment (not a cure) something that eliminates the fatigue 90% i think most of us would take it on an ongoing basis. So they are missing out on a huge market and thus profits. I mean how hard can it be to at least alleviate the fatigue ? To develop a drug that does this relatively safely. Maybe one day, i'm not holding my breath for a complete cure from the drug companies, they rarely develop those as you say solely because of profit.
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    • Posted

      They aren't willing to even research ME enough even for something to alleviate symptoms because research trials, large enough ones, then the meta ones costs a fortune.

      They wait until something they're willing to gamble on comes up and there's nothing as yet.

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    • Posted

      Well not entirely true, as lately we have the Synergy trial by K-Pax pharmaceudicals. I think things are moving in the CFS arena, if it leads to anything is anyone's guess, i am doubtful.
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    • Posted

      I did look into that as you know, but a drug in the trial isn't recommended for people who suffer from anxiety and that includes me. If you're a laid back person then perhaps it might be beneficial, but most people with ME aren't laid back people.
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    • Posted

      so well said David, thank u. similar here, outdoor fanatic. everest to 21,000 ft hardly compromised me? and into the bargain we have done absolutely everything to try to get well incurring enormous expense to boot - an added stress?

      Caitlin

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    • Posted

      Congrats on Everest ! I started using CBD oil today. I'm seeing my GP next week about possible Sjorgens, as i have horrible dry eyes all the time. My life is so boring now with CFS, indoors alot, feeling lifeless, joyless, like a zombie. Can't sleep and everyday i repeat it,.
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    • Posted

      No they're not; they're different terms for the same condition and they've invented a new term for it now but I've forgotten what it is because I have ME/CFS.

      I prefer to use the term ME because chronic fatigue makes a mockery of all of the symptoms and suffering we have to go through.

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    • Posted

      Hi Georgia, the two terms are often WRONGLY used togeher but they are different, let me explain, CFS is seperate from ME, for instance ME means as you well know, myalgic encephalomyelitis, this means pain and inflamation (mainly of the brain and spinal chord) so i cannot have this condition, i have none of these symptoms, testing reveals none of this, chronic fatigue best describes my ilness NOT m.e. One infectious disease consultant i saw also said the same thing, i do not have m.e for these reasons.
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    • Posted

      yes, indeed - a day in the life of a CFS sufferer is not excting. was the CBD oil presribed for u? hope it does the trick?

      Caitlin

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    • Posted

      Hi Caitlin, nah i bought the CBD oil myself. All GP wants to give me is anti-depressants. I'm not ready for those, meds are last resort for me.
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    • Posted

      Georgia i suggest you use google. 'CBD oil benefits.' Apparently it is particularly good for depression states and anxiety. Also beneficial for autoimmune diseases.
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    • Posted

      Oh I do apologise for being so pedantic then David; I didn't know.

      I definitely have ME because I have inflammation of the brain. That may explain why I can be a hot head sometimes. cheesygrin

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    • Posted

      No worries. Amost always the two terms are used together ME/CFS as if it is the same illness when they really are not, i think it goes to show the incompetence of the medical community to allow this myth to be perpetuated for so long, now they have ANOTHER name for it, systemic exercise intolerance disease (SEID), what a joke ! If only they spent more time studying us and finding out exactly what is wrong.
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    • Posted

      Yes, Georgia, I totally agree with you. My illness has been called ME and CFS at various times by my doctors. It's all the same. I once read a theory of this illness that really resonates with me: it's a virus that attacks the brain and the central nervous system. The areas of the brain that are "attacked" determine the symptoms. Thus, the great variety of symptoms that are experienced. My symptoms started with just your basic extreme fatigue. Then they morphed into anxiety (again, my doctor thought this was due to what the illness was doing to my brain). The latest iteration happened 15 years later, after a relapse, when I started having nerve issues. My doctor, who is a foremost ME/CFS specialist in the U.S., said this was due to the small-nerve cells in the brain being affected. So it's not that I suddenly got a different disease. It's that the disease progressed. I, too, don't use the term CFS because I'm sick of hearing people say "Yeah, I'm fatigued, too.)
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    • Posted

      I feel the need to get a t-shirt printed saying 'IF YOU SAY YOU'RE TIRED I'M GOING TO KILL YOU!!!!'. 
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    • Posted

      I couldn't believe it when I saw that new name, SEID. Ridiculous! Did you know they spent $1 million to do that report? And I read that their total budget for ME/CFS in the U.S. is I believe $5 million.
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    • Posted

      No. The report was issued and requested by government entities, not by donations. Unfortunately, the U.S. government allocats less money for ME/CFS than it does for allergies. We're way way down on the list of dollars of research spent for various illnesses. It's a disgrace.
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    • Posted

      I can understand why they're willing to shell a bit of money out and then give up on the idea if the results don't give them a means to make more money.
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    • Posted

      it doesn't surprise me in the least jackie. their primary motivations seem to be SEEN to be doing something, regadless of whether it's of any benefit or not to the reipients.

      Caitlin

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    • Posted

      I think SEID is a good name as it accurately describes the condition, in my view.  Also I think that Systemic Exertion Intolerance as a name might lead to the end of Graded Exercise as a therapy!
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