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We need your GET story to publicise #stopGET petitions

Discussion in 'Action Alerts and Advocacy' started by Jenny TipsforME, Sep 28, 2016.

  1. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @Rose49 it would be really useful to have a Child Psychologist point of view quote from you, suitable for articles, about why CBT is inappropriate for ME (eg how the content is unsuitable or different from other use of CBT in chronic illness). CBT is widely accepted, so it can look odd for us to object to it so passionately. It requires someone with professional experience to explain it I think.

    It could also be really useful to have a quick quote from Ron about why GET isn't just ineffective but perverse for ME (perhaps a quote like this already exists?). I'm thinking something along the lines of hypometabolism at the cellular level meaning that pwme can't use energy in a normal way and increasing exercise without treating the underlying cause is likely to increase symptoms. Of course I can just write that, but it would have much more weight coming from Ron. He may also have a cleverer angle.

    Also if either of you are prepared to publicly comment on MAGENTA (child GET study from same team as FITNET) I'm sure we'd use that.

    There is so much to counteract here in the UK! At least the American and Norwegian projects are giving us hope.

    You can comment here or email GETpetition@gmail.com
     
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  2. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Another angle for a potential article could be the global impact of a few dodgy research studies in the UK. We've received some UK stories and one from Australia. If you live somewhere else and had a negative experience due to GET/CBT/psycho-social Oxford School attitudes this could be worth explaining.

    For example, I can't remember who it was, but I remember an American blog post about the awful treatment someone encountered in hospital after her doctor looked up CFS online and came across PACE. It doesn't have to be that you were made to do GET, it could be the more subtle repercussions.
     
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  3. Jenny TipsforME

    Jenny TipsforME Senior Member

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    One of the frustrating dismissals is that the people who experience harm haven't done GET correctly, or their professional didn't have the right training. It could be useful to have a case study from someone who was treated by one of the main BPS researchers (or their centres) and still experienced harm. How was this handled? What did they do once you had been made worse? How long did your setback last?
     
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  4. Valentijn

    Valentijn Senior Member

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    I was sent to a neurologist regarding my OI, which is probably Neurally Mediated Hypotension with narrow pulse pressure. I'd found a low dose of an NRI (Strattera) to be helpful with my OI, after an ND prescribed it to me in the US, and wanted to get a prescription in the Netherlands, where I live.

    The neurologist wouldn't look at my multiple blood results showing low norepinephrine, nor even really listen to me. He insisted that drugs (and surgery, for some bizarre reason) couldn't help me, only exercise. I asked him why he believed that, and he printed out the PACE recovery paper and handed it to me. I briefly explained a couple flaws of it to him (patient recruitment criteria, lack of objective improvements), but he wasn't interested.

    Afterwards I looked him up online, and he'd been a long-time proponent of psychosomatic disorders and lying to patients to supposedly cure them. There was even some students publicly mocking him for being so ridiculous. I found out a year later that he'd been fired a few months after my appointment, due to being a bit overzealous in supporting an addict neurologist colleague who'd gotten in trouble for harming & misdiagnosing patients, writing fake prescriptions for his own use, etc. Basically the neurologist I'd seen had claimed that all doctors, himself included, make fake diagnoses to "help" the patient, and that was what got him fired.
     
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  5. Jan

    Jan Senior Member

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    We should have been collecting this kind of data for the last decade :(
     
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  6. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @Valentijn thanks can I add some of this to our stopGET stories from different angles document? What would you like to be called?
     
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  7. Jenny TipsforME

    Jenny TipsforME Senior Member

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    There are various surveys with lots of quotes about GET, but I'm wanting to check that the 'source' saw one of the main proponents or their disciples which you can't really get from the survey data (so they can't say they weren't instructed properly).
     
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  8. slysaint

    slysaint Senior Member

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    Not related to any discussion but This sort of stuff doesn't help project the right message imo.
    http://conqueringfearspiritually.com/CFS/best-cfs-books-videos-and-meditations/

    @Jenny TipsforME another angle are the parents being prosecuted or threatened with it when they stopped/refused GET treatment for their child because it was making them worse. Jane Colby mentioned they had about 150 of these cases they were helping with.......oh yes then AYME said they'd had a few too (c. 5).

    EDIT: not exactly the same but there are comparisons with what happened to Sofia.
     
    Last edited: Nov 4, 2016
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  9. Jan

    Jan Senior Member

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    Children would be the most hard hitting subjects for any campaign or protest, but everyone is too frightened of Crawley to spreak out publicly. What has been done, and will continue to be done to children in the form of current 'treatment', Magenta and Fitnet, is so shocking, the truth if it ever comes out will be incredibly hard hitting. The press aren't getting the stories of kids being seriously harmed, of parents being threatened with their children being taken away.
     
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  10. Jan

    Jan Senior Member

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    Surveys are not public interest though, we need hundreds of stories, with names and details which can be used in the press. If you only want info from PACE participators, one idea would be before and after photos, like now bedbound or in a wheelchair. This is what Pace did to me type thing.
     
    Last edited: Nov 4, 2016
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  11. Valentijn

    Valentijn Senior Member

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    Sure, just "Valentijn".
     
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  12. slysaint

    slysaint Senior Member

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    not Valentijn:p?
     
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  13. Valentijn

    Valentijn Senior Member

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    :p
     
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  14. slysaint

    slysaint Senior Member

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    Found this comment on the OMEGA petition:
    "
    my 14 yr old has been Suffering this hideously misunderstood illness sunce contracting gladular fever aged 10. His paed consultant on his 1st apt said Psychosomatic. He was placed on 'at risk' register through false accusations directed towards myself (maunchausens by proxy, empty nest syndrome). He was made to follow GET through our hospital. Apparantly consultations were held between his physio and Dr Esther Crawley NEVER between him/us and Dr Crawley or her 'team' THE PLAN DID NOT WORK it HAD to be reduced and re-started twice. Decissions like 'he can raise his leg to catch school bus' were recorded and actioned for school, Despite this being totally inaccurate! Again THIS PLAN DID NOT WORK and he ended up being 'discharged' by his physio with 'not following correctly' being documented on C I N reviews, absolutley NOT the case. We now struggle on our own, battling this unwanted illness, for a quality of life and the mamouth task of Fighting for a decent EDUCATION for him.

    adrienne davies, North Cornelly, United Kingdom"

    maybe you could post a comment asking people with similar stories to get in contact?
     
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  15. Jenny TipsforME

    Jenny TipsforME Senior Member

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  16. AndyPR

    AndyPR Senior Member

    @Keith Geraghty is looking for stories of CBT/GET harm as well

     
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  17. AndyPR

    AndyPR Senior Member

    Bump.

    If any of the newer forum members have a story they want to tell about GET please check out the details in the original post of this thread.
     
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  18. FredaF

    FredaF

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    I tried PACE style, GET when first ill and rapidly became bed ridden with profound ME/CFS, and had many doctors advocated that I just get out of bed and walk. Now I am improving, the turning point for me is heart rate monitoring, staying under my anaerobic threshold. That has entailed 14 months of focusing on lying as still as possible in bed, then a year of tiny amounts of deep breathing and stretching, now a year of "exercises' in bed....the symptoms have lessened, the curtains are open, the computer is in use, the lights are on....I still have a long way to go but progress is happening. The Workwell Foundation protocols really work, what to call the workwell protocol causes confusion. My ME/CFS specialist advised my doctor and insurance company that I am doing GET. GET is not a term many people with ME/CFS, are comfortable with using, for the Workwell heart rate pacing/energy conservation/recumbent exercise/flexibility/stretching protocols but maybe its time to diversify and campaign against uncontrolled exercise regimes such as PACE-GET (with false promises of recovery), whilst recognising the place for physiologically based management programs (with true promises of incremental improvement in quality of life/prevention of further deterioration).
     
    Last edited: Jan 8, 2017
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  19. JaimeS

    JaimeS Senior Member

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    My doctor in the US had clearly read about the BPS movement, and it adversely affected my care. However, my worst 'graded exercise therapy' was what I did to myself.

    I stopped work because of neurological issues: not being able to remember words, my legs giving out, my face tingling and getting numb. My job had been an active one, in which I rarely did dramatic physical labor, but also rarely ever sat down. My previous existence had been one of constant, gentle movement.

    I thought to myself that exercising was the right way to go if I was to no longer be at work; but I'd already noticed that activity didn't just wind me, but seemed to make all my symptoms slightly worse. Therefore, I decided to be gentle with myself and begin slowly.

    I bought a yoga CD -- constant, gentle movement -- and an exercise bike. I biked slowly and carefully for 10 minutes -- no reaction. The next day, I did 15 minutes of gentle yoga. My hands and feet tingled and felt cold, but I also felt a little energized, like exercise used to make me feel. After several days of 10 - 15 minutes of movement, I upped to 15 - 20.

    It's hard to describe what happened next to someone who isn't sick, but here goes: I began to shake. Placing my hands on my abdomen, my abdomen felt icy-cold in comparison, even though my hands and feet were also suddenly freezing. I stumbled off the exercise bike; the room was spinning. I had trouble walking.

    Trying to mitigate the cold, which seemed worse every minute, I placed myself in a scalding hot shower. The water chilled as it hit me. I could see that my fingernails were blue -- what on earth was happening?

    Leaving the shower seemed unthinkable at a level of cold this deep. It took a surge of willpower (and the reminder that eventually the hot water would run out) to make myself do it. I threw a towel around myself and a robe over that. I threw every blanket I owned on my bed and climbed under the covers and it still felt like I was hypothermic. I shook so hard that my muscles began to hurt. That was when my muscles started to burn, painfully. All of them, but especially my legs.

    I shook, hard, for hours before my body finally began to warm again. When it did, I dropped off to sleep so instantly that it was like I'd been beamed across the back of the head.

    I had exercised early in the morning, but when I opened my eyes long enough to take note of my surroundings, it was dark out. I was still so exhausted that I couldn't turn over. I slept anyway.

    When I fully woke up, it was the next morning. Everything hurt. Every muscle. I still felt cold, but a more normal cold. Sitting up was painful, and difficult. My leg muscles jumped a few times when I tried to move them. It took about a week to get back to 'my normal'.

    You know what I did, next?

    I began to exercise, of course. It was ridiculous that what I'd experienced was the result of exercising. Impossible. Therefore, it had to be a fluke.

    I began to crawl back up the ladder, once I was back to what I considered to be my baseline wellness -- 5 minutes. Then 10. But when I hit sixteen minutes I stopped, because now I could feel the start of the sensations I'd experienced last time and dismissed at the time as something I had to 'push through'.

    The same thing happened all over again, anyway, only less so because I'd stopped a minute or two earlier than last time. It was also a bit less scary, because I knew I'd been okay the last time, but I began to worry I was doing myself some kind of permanent damage. My neurological symptoms seemed much worse, afterwards.

    You know what I did, next?

    I tried a third time.

    Okay, so maybe it was exercise that had caused these symptoms, twice is a pattern, sure. The symptoms were identical, albeit less bad. But, I thought, this can't be true for the rest of my life. That was impossible, so surely the trick was in going slower.

    Real talk: I couldn't accept that this was happening to me. I wouldn't accept that I was this disabled, this suddenly. I found it unthinkable and unacceptable.

    Of course, the same thing happened when I tried a third time. What do you do, then?

    It was at that point that I accepted it. I'm not going to improve by exercising; moreover, I can't exercise. Even as my choices have given me quality-of-life gains, this has remained a constant feature of my illness, and is considered in most medical circles ME's defining feature. All medical circles but the BPS school, whose proponents claim that more exercise and talk therapy will stop a patient from having the sort of reaction I've described here.

    Their research is in the UK almost exclusively, but their papers are read by researchers from all countries. Harmful treatment decisions are made after doctors read this paradoxical research.

    The worst part of recommending GET is of course the physical harm that patients experience. But the second-worst part is that GET implies that patients are deconditioned and lazy, and this is why they have trouble. When I got my CPET scan, the exercise physiologist at Mayo Clinic told me directly that there was no possible way that my response to exercise was due to deconditioning. Psychologists obviously favor another theory; but then, they take no objective measurements to support this theory. When researchers do -- studies that show return to work after GET or CBT, or getting off of government assistance -- they find no change over time. How can ethical researchers and clinicians keep promoting theories that are the product of bias and not hard data?

    You can't cure someone with ME by encouraging them to increase their exercise. Exercise intolerance is arguably the hallmark symptom of ME: that which defines and delimits us. The use of GET for a disease marked by such a reaction to exercise is nonsensical and harmful.
     
    Last edited: Jan 8, 2017
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  20. JaimeS

    JaimeS Senior Member

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    ....I don't know why I didn't see this thread before! That's my story.

    PM me if you want to write up another article for #MEAction -- I think it's time for another push.
     
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