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Patient Experience: "What Bronllys taught me about pacing."

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 13, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...

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    My name is Maya, I’m 42 and live in Mid- Wales. I have had ME for 8 years, am mostly housebound and use a wheelchair outside.

    In April 2012, I underwent a three week residential ME/CFS management programme at Bronllys Pain and Fatigue Management Centre, based in Brecon, Mid-Wales.

    My GP has been very supportive since my diagnosis but had run out of ideas so, when she suggested pain management, I felt I had to give it a go.

    Pain was no longer that much of an issue for me, but the bone-grinding fatigue, sore throat and debilitating cognitive fog were dreadful. I was sceptical as to how a pain management course could help.

    The unit has an open day where the focus is mostly on pain management and, when I questioned this, the staff reassured me that much of the information and techniques were transferable to fatigue.

    The unit runs 10 week community courses throughout Mid Wales as well as a three week residential course in Brecon. I went on the residential course.

    All through the information day, it was stressed by the staff – a physiotherapist, a psychologist, a pain nurse and an occupational therapist – that they were not offering a cure for pain or ME/CFS.

    They were interested in improving the quality of life for people with chronic conditions.

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    I was, to be honest, still pretty sceptical even after my second interview with the unit’s psychologist and doctor. I had heard that graded exercise and CBT were not great and was really not looking forward to going.

    I did not want someone telling me my illness was all in my mind.

    I was also very worried about managing a full day of activities that the programme demanded; on some days at home, I barely made it off the sofa.

    I needn’t have worried; there was no CBT in sight.

    The course is residential; hostel accommodation is set in the beautiful grounds of Bronllys Hospital.

    It is a very intense programme. A typical day is 8.30 – 4.30; sessions include gentle stretches with the physiotherapist, sessions on pacing, medication, finding your baseline to help with pacing, sleep management and psychology – they use a Transactional Analysis approach, looking at how you manage day to day.

    At no point did anyone suggest my illness was all in my mind.

    For many of the sessions, I lay on a mat on the floor as my fatigue was such I found it too hard to sit in a chair. They are very keen for you to keep moving about, keep changing positions and so by the end of the second week I found I was moving from lying on the floor to sitting on an exercise ball to sitting on a chair then back to the floor.

    There is a lot of work done on finding out what you can actually do rather than what you think you can do: how long you can do something like sitting or standing.

    Every one of us in our group seriously over-estimated how much we could actually do, before we got uncomfortable or began to struggle.

    If asked how long I could sit for I would have said I could sit all day. In reality, I could sit for 45 seconds before I began to struggle.

    From that beginning we could work out a baseline for pacing. The idea is that on your worst and best days you do exactly the same amount of activity. This way you lose that boom and bust cycle and have a more stable lifestyle and hopefully over time increase your activity so you can manage more.

    There were exercises with a physio. They were graded but not the GET I feared.

    Exercises were mostly stretching, looking at how to climb stairs or get out of a chair.

    They were set to the level I was at (pretty low) and the increases were tiny and it was stressed were what my body could cope with.

    No one forced me to do 20 minutes in the gym, rather they said stop doing so much, do it more gently, be more realistic, be patient, relax.

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    This was not graded exercise as I knew it. Key to the exercise was being relaxed, physically as well as mentally.

    There was lots of emphasis on relaxation as part of daily living. Moving, sitting, breathing in a relaxed way as well as daily relaxation sessions.

    There is also real emphasis on the ‘quality’ of your movements, as opposed to how much you can do.

    If you can only walk 60 paces, 30 steps in a quality way, but the next 30 steps have you staggering from fatigue; then those ‘quality’ 30 steps becomes part of your pacing.

    Using the information gathered from working out my baselines – what I could actually do on a bad day as well as a good day – I could work out how to pace activities.

    A word about pacing – it can be really frustrating and liberating and make you cry and do a little dance all at the same time. But it seems to work for me. I cried when I worked out how far I could actually walk without it impacting on my health.

    I borrowed the timer from the session and spent an evening trying to increase my time (a useless exercise as this only made me more fatigued and cut down my time!).

    You have to get over this and see it as a beginning – literally baby steps from which you will build upon.

    I left the hospital with a walking time of 22 seconds. That meant once, there and back, to the back gate in my garden. I have done this everyday for three months. Some days I felt I could do way more, some days I struggled, but by the end of the month I was able to manage every day.

    I am still working on increasing my walking: I am now walking there and back 2.5 times and my ‘quality’ is great and I am walking more in the house!

    Each day I do some gentle stretches and relaxation sessions as well as my day to day activities but I’ve had to learn a whole new way of doing things. Before, I would do chores until I dropped, completely overwhelmed and snappy if not downright hostile, before falling into bed... exhausted.

    Now I break up each task, have a cup of tea (I drink way more tea!) do a bit more, drink more tea, do something else, do my relaxation session but I am starting to get more done and I am feeling better about myself for doing it.

    This course did not cure my ME but I do feel more relaxed about it.

    I am doing much more, in a relaxed and paced way and I feel happier and I feel more confident.

    My family notice the difference and say it is good to have the old me back.

    That has to be worth anything.

    Maya's story was first published in the ME Association member's magazine 'ME Essential' (Winter Edition 2013/14), and is reproduced here with both the author's and the MEA's kind permission.


    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

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  2. Nico

    Nico Senior Member

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    I'm so glad to read that this 'clinical' experience was helpful to Maya, without any negative repercussions. For myself, I do need to think about pacing a bit more, so helpful. Thank you.
    Firestormm likes this.
  3. ukxmrv

    ukxmrv Senior Member

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    I know another patient who attended a course in Wales and was much worse afterwards. She simply could not cope with the long grueling days and the (for me and what would be for me) early starts. The journey to the centre (with family support), settling in then getting out of bed and attending the course, even lying on the floor for her was very hard and at the start of week two she was weaker and sicker than before.

    She sadly, had to leave the centre as she didn't feel that staff understood her illness level, the advice she was receiving didn't feel relevant for her and she was deteriorating and in particular her post exertional problems were increasing each day.

    Only mentioning this as with all things ME and CFS what helps one can possibly harm another.
    MartyT, Nico, SOC and 2 others like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    Very good article and Im so glad that there are opportunities out there to help people learn pacing.

    Pacing I personally think is the one thing in which offers most chance of improving and something which so many of us havent quite got right (its often so hard to force ourselves to back off even when we know we should), I wish all had an opportunity to learn good pacing early illness as otherwise this I've found takes YEARS for us to tend to learn right.

    I know how to pace but Im not pacing right currently but there is no way Im able to do so due to the severity of my ME currently and what one is forced to have to do in daily life and without able to pace, I doubt very much I can get a recovery again.

    It sounded thou from this article that she wasnt much more physical capable eg able to make it to her letter box a couple of extra times (thou with good pacing and a long time by that Im thinking 2-3 years or more, major benefits could be seen.. that's how I recovered in the past).. but short term it worked on more the emotional aspects (negative emotions can impact upon ME) and also helped by good pacing to help stop one from doing things which would cause a crash so one is less likely to recover.

    I do think thou many with ME are too sick to do this program.

    It surprises me the early start. Mornings is the time when I have to push myself more and causes for more excertion for me, I burn out far quicker if Im doing something in the morning even just listening, which then can affect me for the rest of the day and make me less capable then. (hence why at home I wont take a phone call before 11am even if I was up. Listening to someone at an early time even if I was laying on a mat, would be an issue for me. (It would be just like all the useless psychotherapy appointments I used to have weekly in which I was too tired to get anything from the info or really listen well, I used to be laying there, trying not to fall asleep and very concerned I may do so (and I did nod on and off and miss lots which was being said to me).

    I also wonder if things like MCS were considered? and would love to hear more on this if the threads writer would respond.. as so many with ME do have MCS issues, which can sometimes be quite severe. So Im wondering were people allowed to wear chemical deodourants and perfumes to this residential program? What about the ones helping on this program did they wear artifical fragnances/deodourants? (or was it like my local ME/CFS society meetings in which everyone is told not to do so).

    Anyway. I are glad there are programs out there but I can see it would be an issue for the very severe group who wouldnt be able to even listen on a mat laying for that long and that excertion of trying to listen for that long, would cause a crash for many. (I'd struggle throu such a program and probably would fall asleep! even if the MCS issue was avoided).
    Nico and Firestormm like this.
  5. manna

    manna Senior Member

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    i dunno, its the notion that we've allowed ourselves to become "deconditioned" and that if we gradually increase exercise we will recondition our, lazy malingering, or depressed, -selves and bodies. just read the M.E.Asociation's explanation of pacing and they seem to think it will lead to recovery...which implies we are only deconditioned, i think..

    i read an article on here about the bed cure, which is counter-intuitive to pacing, and without it, i wouldn't have practically recovered a couple of times- i didn't do it after reading about it here i had already been doing it intuitively..and of course a couple of other things were necessary. according to one study, that i saw on the what docs don't tell you website..90% of folk with me/cfs have very low or no stomach acid. the burden to the system of this toxic undigested food is something that they have not experienced. the main way i have found to diminsh this load and actually improve, is to lie down for 3 hours following eating so that as much digestion as is humanly possible takes place.

    i have MCS too so its a no go...or am i putting up blocks? thats what id be told i think.

    im ok with a little quigong, tai chi, yoga or polarity yoga. i think these kinds of exercises would be more helpfull in these centres...im wondering if its not a cure for me/cfs, as stated why do AfME say : Over time, when your condition stabilises, you can very gradually increase your activities to work towards recovery.

    i wish it did work and although managing illness is top of the list even milder M.E./cfs (as thats the minimum goal i guess), if there is such a thing, is still a life destroying illness according the head honcho of the nhs in 1995. i want full recovery and whilst doing stuff like a little quigong etc is helpfull, plus fresh air etc, less is more for me. certainly no explosive forms of exercise to clear the system out, just implosive (sucking energy to the centre instead of away. its the only way ive found to "re-condition" me and experience tells me this precludes the use of increasing activities...but im crazy, what do i know...i just need a gentle push, supposedly.

    when docs don't understand they lump it under "stress".

    just searching on google and came across this article http://www.nhs.uk/news/2012/08augus...onic-fatigue-syndrome-not-cost-effective.aspx off topic maybe
    Last edited: Apr 15, 2014
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  6. justy

    justy Senior Member

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    I though the clinic looked interesting - especially aimed at helping people MANAGE their illness, pain and fatigue levels. Also its not that far from where I live and a good 3 weeks away from my family sounds great!

    However, I am concerned that it says on their website they follow the 'biopsychosocial' model, and also at the long days- 8.30 - 5.30 every day for 3 weeks. There is no way I could manage that amount of taking part - even if laying down - the stimulation for that long every day would, I think be too much. Then at the end of the day you need to cook your own meals as well. As PEM is a big problem for me even from spending an evening chatting with friends I am not sure whether I could cope.

    I would be interested in hearing more from Maya directly about her experience, and how it is helping now.

    I think perhaps the idea that you can rest until ready to increase activity and head for recovery, as someone mentioned above may work for the percentage of people who do recover in the first couple of years. I suspect they have PVFS and where going to recover anyway.
    golden, SOC, Min and 3 others like this.
  7. justy

    justy Senior Member

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    Just wanted to make a more posistive comment - its good that Maya found out her real pacing threshold. I think this is immensely hard for all of us. Of course, even if I discovered that I should only be on my feet for 5 minutes at a time, there wouldn't be much I could do about that as I do need to be able to look after my kids and cook etc. Having to push to complete tasks of daily living is always frustrating, but sometimes necessqry.
    Nico, Min, peggy-sue and 2 others like this.
  8. manna

    manna Senior Member

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    hi justy, resting helped me and i didn't recover anyway. without organic candid/crohns/coeliac diet and a specific complimentary therapy, resting alone (to digest food predominantly) would definitely not heal me, though still better than having 3 meals rotting inside me each day. it wasn't as simple as resting, in fact it was extremely complex. also it was several years before my first near recovery. ive had a dignosis of M.E from a highly respected doctor...one who teaches medical students in university....i feel like im competing to be genuinely ill. its a raise'able point though and i wish it applied to me. oh having a mercury filling triggered it too, not vral. i can't locate the bed cure on here...pretty sure it was a blog by cort

    if management was/is actually their goal then cool...but you know, "we have to be gentle with them, we have to make them think we believe and then once here, we can show them their mistake". plus they have nothing else cos conventional medicine is not really about recovery, its about masking symptons--which can lead to chronic ill health imo.. i hope this all ok to say and how im saying it, im not out stir things up.

    edit: i know what you mean though...when i hear the word "recovery" i start wondering what wasn't wrong with them..and it grates when they think such and such will sort you too, when you know it won't.

    oh & many thanks for raising this as it prompted me to search google and have come across the "inclined bed therapy" (which is generally used just for sleep i imagine so different from what im suggesting in some ways...basically raising the back of your bed by 6 inches so the feet are lower than the head...worth a try http://www.frex.com.au/ibt.html
    Last edited: Apr 15, 2014
  9. ukxmrv

    ukxmrv Senior Member

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    I guess for me the "telling" part was when Maya described how she had changed the way she did things i.e. stopping and starting activities. From this brief part I gather that Maya doesn't have a problem with personal care like bathing everyday or preparing meals. Also I think I am hearing that she was able to do the same walk building up each day on top of all the things that it takes to survive (cooking, cleaning, bathing etc).

    I've been through this approach when I was at this level (I'm not there at the moment as my physical functioning doesn't cover the everyday tasks like bathing) and found that every time I got there I hit a glass ceiling, didn't improve further and then a virus or sinus infection would hit me and take me back into the bedbound state.

    It wouldn't have been possible for me to attend a (what is for me) grueling residential course, travel and then come home to increase my functioning in the way that Maya describes. It didn't work when I identified my pacing "limit" without all of that.
    SOC, Min, Gypsy and 4 others like this.
  10. redrachel76

    redrachel76 Senior Member

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    This is a very poor article. How are patients supposed to manage with dust mite allergy, chemical intolerance, food intolerance, fibro pain in strange beds. 8 till 4 pm non stop in front of strangers.

    Are MS patients subjected to this "learning how to manage" stuff?
    How do I get my IBS constipation and tender points treated at these places?

    Patients like Maya are part of the problem. If all patients in the country boycotted these "pacing" centres and boycotted all NHS CBT "treatments" and lightning process nonsense, they would peter out. They need us patients to make their money.

    Where I live FMS and "CFS" patients are actually setting up CBT and graded exercise centers and promoting them to patients like me. That's how bad it is.
    MartyT, GalaxiiGrl, Wildcat and 8 others like this.
  11. Gypsy

    Gypsy Senior Member

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    I have to agree with Rachel. While happy to hear that anyone with any illness has improved......

    This article made me cringe, for the harm it could do others.

    And I have to point out, 90% of patients with ME would never be able to follow program that requires them to be awake at a set time. Our "internal clock" is abnormal. Circadian Rhythm disorders are rampant in ME. How could anyone with circadian disorders possibly follow such a program? It would be torture and disastrous to their health.

    Many people with ME wax and wane anyways. What I do today, I may not be able to do tomorrow. Vice versa.

    I believe that all or most ME patients also tend to naturally learn pacing and adjust their activity to how they are feeling accordingly.

    I don't understand the point of these clinics. Is the government somehow making money off patients they refer in some way? In patient treatment is expensive.

    I was really disappointed to see PR publish this article when we know many moderate/severe patients have been forced into such CBT/GET programs with horrendous results.

    It is these kind of highly personal, subjective and anecdotal reports that people use against us to promote GET/CBT. "Well I heard about this one person...." It is almost like the intro to a bad joke you've heard a hundred times. And one that isn't even amusing.
    Last edited: Apr 15, 2014
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  12. manna

    manna Senior Member

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    one point i use to gauge whether a treatment may have value is if it makes you worse first. that was definitely my experience in a recovery phaze. right upto the last week all my symptons and fatigue became more pronounced. in retrospect i saw this as my body regaining its intelligence and realising and sensing what a mess it was in. it has to sense it and feel it to counteract. psyche treatments, and some others, work on the notion of feeling better all the way until you've recovered. if you have no candida overgrowth to balance or x amount of viruses hanging around, mercury toxicity etc then you might feel slightly better from the off, but was that me/cfs? no-one gets over flu without knowing about it first. folk who do perrin get pretty ill first.

    there is a marked difference between getting worse as you recover and getting worse from a crash...the former may have worsening of symptons, due to detox etc, but you can tell its because you're heading in the right direction. western medicine...stop the appearence of illness now...short sighted and dangerous..shame theres a minority of me/cfs/mcs folks who help sell these treatments. it does set us back imo but i suppose its a free country. i sometimes wonder if it will get to the point that whereby if you refuse x,y and z treatments, you'll lose what doctor support you have. actually since refusing bristol me/cfs clinic im on my own and still getting awarded but every time on appeal. so yeah, could defo be dis-service, said respectfully..its what i think.

    ive hung around a site that is predominantly psyche orientated, and made friends with many people there...none that frequented the site had any decent real improvement over 5-6 years. i also got annoyed with all the word manipulation like 100% improved. illness makes you impatient (bowel disoders and impatience go hand in hand(not happily:)) and folks want immediate improvement. it'd be nice

    pr are right to publish it as now we have a chance to express our concerns. these me/cfs centres in the uk can help folk with social money and remove the burden from your doctor being suspected of signing folk off work too easily. not that redeeming really. to someone who knows their shizzle me/cfs is fairly easy diagnose i think. the fact that western medicine cannot step up to that mark speaks for itself and why should i put myself through a programme like that to appease their lacking. not that i could it with mcs anyway...oh wait but the movement will sweat it out, right? hmmm
  13. Kina

    Kina Moderation Team Lead

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    What they offer does include CBT and other psychological therapies.

    I am glad it helped Maya a little but I really think these centers aren't very useful at all and could be very harmful.
    MartyT, ahimsa, Wildcat and 7 others like this.
  14. Martial

    Martial Senior Member

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    Have you ever looked into betaine HCL supplementation? this will help immensely with the low stomach acid.

    http://scdlifestyle.com/2012/06/hypochlorhydria-3-common-signs-of-low-stomach-acid/

    http://scdlifestyle.com/2012/03/how-to-supplement-with-betaine-hcl-for-low-stomach-acid/
  15. SOC

    SOC Moderator and Senior Member

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    I have a big problem with any treatment, patient report, or research coming out of the UK because of the Oxford Criteria used extensively there.

    How can I know if the information applies to my situation when there's a far more than 50% chance that the "CFS/ME" patient does not have ME by ICC (or even Fukuda)?

    With such a broad and inaccurate definition being used, a segment of any UK "CFS/ME" population may indeed be only exercise-phobic or deco dirigibles (had to leave that spell-fix in because it's funny -- I meant deconditioned) and therefore benefit from CBT and GET.

    Please understand I'm not suggesting in any way that all UK ME patients don't have CCC or ICC ME. I'm confident there are many ME patients in the UK suffering from the lack of any real treatment.

    I just don't see how an ME patient can know whether reports out of the UK apply to him/her or not. It's like mixing all cancer and MS patients and then reporting, for example, that removing part of a lung puts the illness into remission. It might be great for a small section of their too broadly defined patient group and be dangerous for the rest.

    Without even a passable diagnosis, how can we evaluate the usefulness of treatments, patient recommendations, or research?
    GalaxiiGrl, Wildcat, Min and 2 others like this.
  16. Nico

    Nico Senior Member

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    I guess when I read the article, I wasn't paying attention to the "between the lines" info. I have to agree, I could not do a regimented schedule like that. Didn't even think about MCS/EMF stuff. I suppose when I read Maya's write up, I got the impression that she gained something from it.
    I also appreciate others' comments about pacing as an ongoing learning process, and accepting our fluctuations. I needed to see that today, thank you.
    justy likes this.
  17. November Girl

    November Girl Senior Member

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    I think the information provided was excellent - like not doing more on your good days than you can do on your bad days. I realize that my activity level is still higher than it should be. I have continually cut back over the past 10 years or so, but I haven't reached the point that I don't trigger crashes. I realize I'll have crashes whether I overdo or not, but I don't have to cause them myself. My pacing has also improved, but it still sucks.

    I had an eye opening appointment with a chiropractor last week. He asked me to do several stretches and stop at the point when it became painful or difficult. I was amazed to hit that point within a second.

    To be honest, I'm not sure how willing I am to give up some present life, even knowing that it will help me to improve. I am much better than 5 years ago. For instance, I can push in the button on my refrigerator to dispense cold water.

    A lot of harmful information has been promoted as GET. Nancy Klimas stresses that exercise is important, but only at the patient's level. For a bedridden individual, the exercise may only be lifting your arm from the bed. After a long time, try adding another rep. If that 2nd lift causes a problem, then drop back to one lift. It is graded exercise therapy, but tailored to the patient.
    Firestormm likes this.
  18. lastgasp

    lastgasp

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    All graded activity is contraindicated in ME - it's simply wrong and potentially dangerous, AT BEST it's still cruel as it reduces quality of life because that person "lifting their arm from bed" now can't lift their arm to use their phone or laptop or whatever as they've just redirected all their energy into a meaningless physical jerk that is not "strengthening" or "healing" anything -- the muscle and nerve and metabolism pathology of ME is not behaviourally "strengthenable", all the evidence (and patient experience) is against it and there's no evidence that deconditioning is driving the functional losses, but a fair bit of evidence that (untreated) disease is.

    Think about it -- why would people become so severe that they (though continual paralysis is very rare as some degree of fluctuation is part of ME) weren't able to move their arm in the first place? The answer is, overuse syndrome and muscle damage due to a long period of the very thing the BPS school claim to be trying to get people to do - resisting becoming that disabled in the first place! Unlike many other "fatigue" related diseases, with ME people have to preemptively reduce exertion i.e. rather than "use it or lose it", it's "don't use it [as much], keep it". People that have fought for years to keep from becoming bedbound may be eventually in a worse shape that people who were supported and instructed to bed rest for an extended period to preserve homeostasis. That may be why we sometimes hear of these miracle "recoveries" after ten years of being bedbound etc. The people who are dragging themselves through relatively tiny yet symptom-provoking efforts every day (probably because they don't have appropriate support) have a massivily reduced opportunity for remission and increased dangers of complications, despite "gentle pushing" being presented as the answer to deconditioning with the handwaving of "strengthening" and magic woo of "healing".

    Similarly if "sleep hygeine" works that's another pointer to possible misdiagnosis -- as most pwME have sleep dysfunction - and react very badly (with more than "fatigue"!) to any sort of strict time discipline including sleep. Typically it rapidly causes immune flares, increase in pain/allodynia, temperature and orthostatic intolerance and decrease in cognition, digestion etc, and of course, yet more worsened sleeping! It may not be a bona fide sleep disorder in all but it's more than mere symptom intrusion, as these counter-intuitive effects do not occur with healthy people (wow it's almost like some kinda disease).

    I find it exasperating that this course of disciplining-yourself-better (being misleadingly presented as "pacing") is being persented here as if safe and suitable for ME. The only people with ME who could possibly do a full day of this sort of stuff are the mildest affected, and ironically they don't need GET -- apparently they just need to be told to do less. In the current ME climate a challenge to our sympathies indeed.

    And remember almost no-one understands what severe ME is or how it affects people - severe sufferers are always vulnerable to the chilling effect, the prescriptive drift, from the behavioural gumph mildly affected people seem to be brainwashed with in the UK, with terrible effects directly and through stigma and sheer ignorance. Why should there be dedicated biomedical ME centres that care for and prioritise severe cases when all you need is some lifestyle discipline and sleep hygeine - which must mean that some people just need it even more.

    There is NO monitoring of ME as a biomedical disease -- it's treated as "fatigue" which is treated as a latter day hysteria or somatisation. Besides the severity of the disease there are multiple barriers to getting taken seriously by the NHS which boil down to the BPS "somatic syndrome" model and advice to doctors to not endorse or "enable" [treat as a real disability] sufferers. The rehabilitation school which includes pain clinics and the various non-psych as well as psychiatric specialism, are the epicentre of this. The upshot is more pwME dying needlessly as cancer, heart disease etc are missed - and excrutating long suffering that mildly affected sufferers (& most charities) can't seem to begin to understand.

    Drs Klimas (and Bateman et al) are fatigue doctors who far from reliable commenters on ME and exercise - they send out mixed messages and don't seem to understand severe cases nor real world circumstances that people find themselves in that make any sort of increasing exercise a luxury. Maybe their treatments are so terrific that people become able to do more but that just invalidates the need for any form of GET -- in remissions pwME can increase their activity spontaneously. Also, an important feature of ME (that differentiates from depression!) is that pwME tend to overestimate their abilities, hence the assumption that sufferers aren't doing as much as they can is ignorant nonense. Yes these people had the temerity to sign the ICC -- but that's all it was, a signature.

    Remember the IACFS wants to have physiotherapists as clinical leads for us, and recommended GET for bedbound sufferers (probably based on Bateman's exercise advice for them -- see the PDF on their site). And people wonder why we're pissed off.

    Glad to see that other commenters have seen through this NHS apologism.
    GalaxiiGrl, Wildcat and Valentijn like this.
  19. MartyT

    MartyT

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    I attended the course along with 8 others. We were all lumped in together, having to sit through hours and hours of irrelevant classes. With such a small group, the classes could have been tailored to the different needs. It was very repetitive and I found that 2 of the tutors treated us like children. Transactional analysis??????
    One of the "patients" claimed that he was told by the team that he wasn't in pain, he had a pain aura. (He was on a lot of pain killers!) I believed he was in a lot of pain.
    I think the place needs a shakeup as the staff seem to be stuck in a rut, seemed very old fashioned. It felt to me like they'd stretched a weeks worth into 3 weeks of classes, hence all the repetition. They just seemed to want to make the numbers up.
    I don't understand how it helps by standing there and saying hello to your feet and feeling the floor through your socks? We all had to walk round "being happy" too.
    If I'd had to pay for this course, I'd have wanted a refund.
    dancer, justy, redrachel76 and 2 others like this.
  20. ~Tatty~

    ~Tatty~

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    UK
    I'm having an "aha" moment. This is a helpful sentence to me.
    I thought I was pacing myself, but idiot that I am I've been doing it the wrong way round ~ I've been trying to do my best even on my worst days! eg, today I was too tired to read my book, so I set about trimming the garden hedge instead (it's been on my long list of chores for weeks now).
    It was supposed to be a quick tidy, but took me 3hrs and way too much energy. I know I'm going to suffer for the next week, my arms & fingers are burning, but what choice do I actually have? Nobody else is going to do the chores for me, I can't afford help.

    What I should probably have done was to do the hedge over a few days, however UK weather doesn't allow for that. It's been raining every day, and yesterday we had hail. I have to do the garden chores when it's dry enough to use the power tools (I haven't the strength to use manual clippers).

    I've already worked out I have about 4 hrs of energy per day. It's been incredibly frustrating to realise day after day that I spend all my energy quota on the household chores, NEVER having the energy to do the things that I enjoy, my hobbies. I've recently given up my voluntary work, reluctantly, because something had to go, I have to cut down on the amount of stuff I do. I am resentful, exhausted, irritable & depressed with my situation.

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