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

Posted , 15 users are following.

january21
january21

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!

3 likes, 136 replies

136 Replies

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  • alison44235
    alison44235 january21

    Posted

    I am going to a ME clinic soon. I shall be ready with my replies if I don't agree with what they suggest. i am well experienced with the problems as I have had ME for quite a long time. As my husband says I could probably teach them a thing or two. I am hoping I get some good advice that I can work with and that there are some new strategies that they can suggest that will work for me.

    Good luck

  • IngeniumSingula
    IngeniumSingula january21

    Posted

    Hi,

    I sympathise with you.  I really don't agree with GET which is usually combined with CBT.  It is based on the premis that physiologically there is nothing malfuctioning and the body is 'deconditioned'.  Most CFS sufferers were very active and suffered some sort of insult to their bodies such as a virus or toxic substance, after which it doesn't fully recover.  Normal training practices to get fit are actually damaging to CFS sufferers but the current medical thinking hasn't caught up with that yet.  Also the success rate for GET isn't that good.  I've got some journal articles with results in - must find them and put them on here.

    Some months ago my employers offered a free Step into Health course.  I thourght great, a free qualification and it might be useful for patients.  I was in three sections: diet, exercise and wellbeing.  I had to read the information, answer questions and plan a routine and changes to diet and exercise.  After following what were essentially the Government's guidlines for diet and exercise, I had the worst relapse in 4 years and it's taken 4 months to get back to my normal which is around 70% of pre diagnosis level. 

    I got to 70% by sleeping two extra hours and resting as much as possible (including sleeping in the afternoon if necessary), the exact opposite to NHS advice! 

    I too have put on weight since being diagnosed, I'm now trying to get it under control with the paleo diet.

    I'd like to know how you get on with the phychologist.  Also, are your muscles still quite strong?  Do they have shape or are they wasted?  

    • seidman
      seidman IngeniumSingula

      Posted

      Have found the hard way your first paragraph to be true for me.

      I got hold of the PACEtrial as published in the Lancet in 2011, and the later detailed critique.  The stats in the trial are hardly convincing.  For the GET group, 161 folk, the mean improvement in the 6 minute walk test was around 312 metres to 380 metres.

      In March 2015 the BMJ editorial stated as a headline that CBT/GET work and that the evidence is solid.  It concluded with the same message - yet in the previous paragraph admitted that the statistics are subject to contention, and criticised the PACEtrial! - I think the PACEtrial, I couldn't find the reference.

    • seidman
      seidman IngeniumSingula

      Posted

      Hi. I used to be able to cycle very hard for two hours on a good magnetic trainer - I can't do three minutes now. I've gone from tree trunk legs to pigeon stuck legs.

      I never could do many pressups, but can do 20 on a less bad day.

      I've found I can keep weight down by drinking water all day, only one coffee and tea.

    • IngeniumSingula
      IngeniumSingula seidman

      Posted

      Thanks seidman, it's all useful information.  The evidence isn't convincing. If those treatments worked we would all be cured.  I can walk but I can also fall asleep quickly if i sit down  whilst cooking tea and wake up to the smell of burning.  Walking is no measure of foggy brain either!  I'll drink more water then. I try to stick to one tea and coffee, that way you don't get used to the taste and it's still a treat.
    • seidman
      seidman IngeniumSingula

      Posted

      Yes.  I have one really nice coffee at 10:30am, then lots of water until 5pm, a mug of tea.

      I forced myself not to sleep in the day, as staying asleep at night is a rarity.

  • mandyoscar
    mandyoscar january21

    Posted

    Take no notice of people who haven't experienced any symptoms of CFS/ME. They don't know what they are talking about. 

    I have been suffering for a year now and know how you feel.

    the condition can affect you so badly that even showering is too much at times.

    You are NOT!! A lazy cow. I feel for you because I know what you are going through. 

    I get so annoyed with ignorant people!!

  • IngeniumSingula
    IngeniumSingula january21

    Posted

    Hi January21,

    None of us are lazy otherwise we wouldn't be looking for help to get better!  I think you need TLC, not exercise!  I found the article i was looking for.  Entitled 'Chronic Fatigue - is GET doing any good', it appeared  in Vol 17 No2 of Frontline, dated Jan 2011. It states that 56.5% of 906 patients who tried GET said it made them worse!  So for 43.5%, there was no change or they improved - no figures for that though.  I wander why????  

    Physiotherapist Pete Gladwell is quoted '...goal setting, but with a plan for relapse if need be. It seems that when people have had a poor experience of GET they felt they hadn't had permission to step back'.

    It must be being taught very badly then if that's what 56.5% report!!!

    Hi Fidd, I agree with you but I'm not even sure I'd call it a placebo as a placebo brings about the effect you want .  The benefits are probably due to social interaction and a bit of fresh air on the way to the clinic.  Has anyone checked if the meagre benefits last?  Where did you get the video?  The spin around GET/CBT reminds me of the story of the Kings New Clothes... I'm just not seeing them.

    • jackie00198
      jackie00198 IngeniumSingula

      Posted

      From my own experience of GET/CBT, I have a hard time believing they can help anyone get better. At best, CBT is a coping mechanism that works for some, though not me. As for GET, it caused me to relapse. I think that the mechanism that allows "normal" people to improve health though graded exercise is broken in us. I think the severity of our illness determines our limits. If we try to push beyond this, we crash.
  • IngeniumSingula
    IngeniumSingula january21

    Posted

    Hi January21,

    None of us are lazy otherwise we wouldn't be looking for help to get better!  I think you need TLC, not exercise!  I found the article i was looking for.  Entitled 'Chronic Fatigue - is GET doing any good', it appeared  in Vol 17 No2 of Frontline, dated Jan 2011. It states that 56.5% of 906 patients who tried GET said it made them worse!  So for 43.5%, there was no change or they improved - no figures for that though.  I wander why????  

    Physiotherapist Pete Gladwell is quoted '...goal setting, but with a plan for relapse if need be. It seems that when people have had a poor experience of GET they felt they hadn't had permission to step back'.

    It must be being taught very badly then if that's what 56.5% report!!!

    Hi Fidd, I agree with you but I'm not even sure I'd call it a placebo as a placebo brings about the effect you want .  The benefits are probably due to social interaction and a bit of fresh air on the way to the clinic.  Has anyone checked if the meagre benefits last?  Where did you get the video?  The spin around GET/CBT reminds me of the story of the Kings New Clothes... I'm just not seeing them.

    ps. I've found the video on youtube.  It's shocking!

    • Fidd
      Fidd IngeniumSingula

      Posted

      "The benefits are probably due to social interaction"

      And the 'benefits' seem to be nothing more than people describing their symptoms a bit more positively. I suspect the results some researchers try to spin as showng CBT/GET can lead to recovery is nothing more than patients wanting to be polite to the people they've spent time with. Fitness doesn't improve. Real world outcomes like employment rates/diability claims don't improve. All they have to sell themselves is some minor changes in questionnaire scores.

    • caitlin39841
      caitlin39841 IngeniumSingula

      Posted

      i was part of a study with one of these ME/CFS clinics in the early days of their tenure where GET/CBT was evalauted. having studied research methodology, i can safely say, the way the raw data was collected / colated was totally ad hoc. anything but scientific.

      some of the participants in my group filled in their data forms retrospectively i.e on arrival @ the clinic. some had not adhered to the GET regime as it made them worse. however, coz there was 'pressure' & fear that ppl would be labelled uncooperative, lazy, not making enough effort etc. etc.they recorded what was ''expected'' of them rather the actual. the following year that, paticular clinic got the local media headlines, reporting that they had found a 'cure' for ME/CFS based on the results of this ad hoc farcical audit. of course it had to be promptly retracted and corrected. instead they said something along the lines they study showed very promising results in the management of ME/CFS etc. etc.

      Caitlin

    • Fidd
      Fidd caitlin39841

      Posted

      Interesting but not surprising. Can you remember any details of what study this was?
    • caitlin39841
      caitlin39841 Fidd

      Posted

      as far as i remember it was GET/CBT as opposed to pacing. and again as far as i remember it contributed to a meta analysis. i'm not sure what title was given to the research piece. anyhow, it was reported in our regional evening news as 'a cure has been found for ME/CFS' with a brief description of the ME/CFS management course. apparently the switch board went down with the number of calls the following day. it was later promptly retracted and explained that it was 'media misinterpretation'. it seemed a combination of 'over stating' the findings & possibly media gymnastics. this particular clinic saw itself as a 'beacon of light' in the ME/CFS field. it 'cherry picked' it's course participants????

      Caitlin

    • Fidd
      Fidd caitlin39841

      Posted

      Thanks. If any further details come back to you that you want to share it would be good to be able to work out exactly what study it was.
    • christine95213
      christine95213 caitlin39841

      Posted

      I've studied research methodology too - MSc module after doing the MA module but finding the Social Science approach too wishy-washy!  

      I've also attended a 12 week pain-management programme.  The evaluation for mine consisted of three standardised questionnaires on mood, social interaction, quality of life - that kind of thing.  We were given half an hour to fill in the first round on the day we started.  We were never allowed to see them again.  We were given 0 minutes to complete the same questionnaires at the end.  The course was actually finished but they threw the evaluations on the table in the last five minutes and asked us to fill them in before we left.  People were in a hurry as we were already late so they probably took less than 5 (well I took 5 minutes and I was the last person left in the room).

      No account was taken of confounding factors - I told them that my fentanyl patch had been tripled over the course of the 12 weeks!  That might have been why I scored the highest improvement in the group!

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