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A Little Poisoning Along the Road to ME/CFS
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Psychiatric Theory in practice: Liverpool CF/CFS Clinic Patient handout

Discussion in 'Action Alerts and Advocacy' started by Orla, Mar 25, 2010.

  1. Gerwyn

    Gerwyn Guest

    Orla I areadont know about this but is it possible to find out if these patients are diagnosed according to nice guidlines if not why not

    Just as a point the Nice guidelines referr to CFS also known as ME

    Perhaps it may be worth using the terminology ME also known as CSF because doctors will assume the difference in our favour.most of my docs think the two are seperate anyway.We can play the same game as the psychos

    ME the neurological disorder also labelled by psychos as cfs .The press think they are different as well
     
  2. jace

    jace Off the fence

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    Absolutely. Gerwyn is spot on. Always refer to having ME with a /CFS if necessary.

    Thank you, Orla, for the heads up. I am being referred to the Sussex CFS clinic - in about three months - and if this is the songsheet they are using (same as Tracy Chalder in the GP training video mentioned above) (link) then it is better to be forewarned.

    What do they mean, ME aka CFS patients muscle recovery is the same, and takes the same time, as well people. We all know this is untrue, and this pretty picture

    [​IMG]

    illustrates it nicely.

    I find I am getting more respect for my knowledge of my illness at doctor's appointments these days - is the worm turning??

    I think it is our main task to educate those people we come in contact with on a daily basis.
     
  3. Orla

    Orla Senior Member

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    Hi all, thanks. It has been a lot of work writing stuff out but I think it could be useful in he long-run.

    Elliot, thanks for your post, and for "coming out" so to speak about your experience. East midlands :eek: :eek: That deserves a thread of its own. If I get the energy I might start that in a few weeks.

    The booklet makes the information sound scientific and based on research and good clinical observation and practice. This is one of the things that makes it so dangerous. They are also telling patients that they can cure themselves, which of course is a very attractive idea.

    It would be easy to be at least temporarily convinced by the information, and to try GET etc. and it could be too late before someone realised that it was harming and not helping them. And they keep hammering home how safe exercise is (I will be posting on the exercise section of the booklet soon - I am sure you will all be delighted to hear more about that particular "cure" :D :D).

    Orla
     
  4. Orla

    Orla Senior Member

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    Jace, Sussex, I am afraid is into the psycho-social view of ME/CFS. I think they are linked in with the Barts CFS clinic (in London) in some way. If you want to see what Barts is like click on this link http://forums.aboutmecfs.org/showthread.php?t=1757

    You could still keep the appointment and report back?? Though it could be risky if some crap ends up on your medical notes. On the other hand it could be difficult to wriggle out of the appointment now without looking uncooperative.

    Because some people were unhappy with the patient group in Sussex, which supports the psychiatrists, they set up an alternative patient group. I will dig out the details for you. They might be able to give you more info.

    About this:

    Yes, Oxford is ridiculous. But another thing for people to remember is that we cannot take anything the psyche lobby claims as a success (either from the studies or clinics) as a claim based on actual facts, unless there is objective evidence. Often the reality is totally different from the spin they put on it.

    This is interesting re someone who was a partient participant on the FINE trial:


    The interesting thing about this clinic in Liverpool is that they don't listen to patients, or change their ideas based on patient experience. Even when people attending the clinic challenged some of the ideas they were given, they were dismissed as being negative and so on (this is what I have heard).

    Another interesting thing I have heard about the UK clinics in general is that they have high dropout rates, and often the people who finish the courses are the ones who don't have ME/CFS in the first place. If a proper audit was done this would be picked up. Of course the psycho-social people have the whole thing stitched up, so I am not sure this will ever happen, and of course they would probably turn their own failure on the patients, saying they weren't motivated etc, as an excuse for their own uselessness.


    Gerwyn, about their criteria etc. On page 3 of the handout they have

    So they think they are the same.

    I understand te argument about de-linkng ME and CFS but I think it could be a dangerous one at this time. These people think ME=Fatigue CFS=Fatigue so ME=CFS=Fatigue. They claim to be talking about all of us, no matter what we think. And they are the ones that have the clout and the ear of the government.

    And CFS was the name for the ME epidemics in US, so historicaly they should be the same thing (of course the definitions were a bit different, and then the politics screwed it up etc). Most of the research is conducted on "CFS", so that is another problem. And most patients will now be diagnosed with CFS rather than ME, so I would be worried about patients getting shafted if they ended up in the CFS bracket, if the 2 terms were de-linked.

    On the other hand, I do think a clear distiction needs to be made between Chronic Fatigue and ME/CFS. But no point in talking to the psychologisers, as they know all the arguments already and don't care. It is other people that this point needs to be put to, though I am not sure most of them will really get it until we have tests to prove we are sick. Of course they won't run tests for fear of encouraging our beliefs that we have an illness. So catch 22 there.

    Orla
     
  5. Orla

    Orla Senior Member

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    End of Chpt. 7 Summary of Alterntive Thoughts

    [Orla Yes Pauline (Powell) you need to say that to yourself while standing in front of a mirror]

    [Orla they can get patients in a bind with this. Since if they are not recovering it can be said that it could be partly due to unhelpful thoughts. So there is likely to be an assumption No recovery = unhelpful thoughts]

    Thanks Maarten. It is nauseating stuff allright. Wait till you see the exercise programme. That's coming next.

    Orla
     
  6. jace

    jace Off the fence

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    Orla, I will attend (if I'm not too sick to get there) and I will report back. I am in touch with the alternative patient group, so no need to dig out the info. Thanks for your work again.

    Jane x
     
  7. Gerwyn

    Gerwyn Guest

    my argument is not really about delinking but a change of emphasis M.E (relabelled by some psychiatists as cfs) ME is classified by the WHO as a neurolgical disorder

    Use whatever weapons we have.Just a suggestion but the power of the label is huge
     
  8. Orla

    Orla Senior Member

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    Hi Gerwyn, CFS is also classified as neurological by the WHO. It is index linked to ME, so has same number (note different classification of Fatigue Syndrome and Chronic Fatigue syndrome in second link)

    ICD 10

    http://www.meactionuk.org.uk/G93-3-ICD-10-compilation.jpg

    http://www.meactionuk.org.uk/G93-3-ICD-10-index-closeup.jpg

    If XMRV pans out, even for some, it might move things along in a non-psychiatric direction for everyone, though I would still be worried about some being left behind.

    Orla
     
  9. Orla

    Orla Senior Member

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    Abnormal reactions to exercise in ME/CFS

    Before I posted some of the comments in the handout about their exercise programme recommendations, I thought I should post some quotes regarding exercise and ME/CFS from elsewhere, as this will put the (hideous) Liverpool comments in context. I will go on to post comments regarding the suggestions for exercise from the Liverpool literature.

    I got these quotes below (or most of them anyway) from http://www.meactionuk.org.uk/Organic_evidence_for_Gibson_Large_Print.html I have put some sentences in bold.

     
  10. V99

    V99 *****

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    The people who work in these clinic have been brainwashed themselves. It is a textbook example of the Milgram experiment.
     
  11. Orla

    Orla Senior Member

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    Chapter 8. Designing an Activity Plan Safely

    Ok, back to the Liverpool handout. My main overall impressions of this is that they are that they keep harping on as if this programme will definitely bring about a recovery, and that it is perfectly safe. They effectively tell patients to ignore any worsening of symptoms because they argue that these symptoms are just a result of deconditioning, or stress, and that it will go away once they get fitter.

    [Orla - Note: "in addition", so this is on top of your daily activities]

    [Orla - Compare those statements with the quotes in my previous post]

    [Orla - ignoring sudden onset, sudden relapses. Also blaming patients for the severity of their condition ]

    [Orla – Considering all the waffle about deconditioning it is a bit weird that they talk about starting activity at a level well below their current level of ability. People who advocate GET often claim we are "afraid" of symptoms, phobically avoiding activity and doing less than we can, yet Pacing which most patients do or advocate (I mean the correct old-fashioned version of pacing and not the new GET-lite), does not advocate doing less than one can, or a reduction in activity levels, unless the person has been overdoing it, or is having a flare-up or relapse.

    I think the GET advocates are saying to do less exercise (than one can) initially, partly because they have this idea of a consistent baseline, and they want the patients to stick to a pretty rigid programme. It is easier to get the patients to buy into the programme if they start at a low level of exercise and build up. If patients didn't do this they might feel really bad straight away and stop. By starting at a lower level than they are capable of, the patient might feel better initially - because they are doing less not more. But they might still think that GET is going to work because they feel better initially. It might take a while before the patient tries to push past their previous level or "natural" ceiling, at which point they start to feel worse (with the exception of the lucky ones who were getting better anyway, and so who can just keep increasing activity levels to normal).

    Sometimes, once patients are convinvced that GET is going to work, even when they come up against evidence to the contrary (e.g relapses once they go over a certain level of exercise) they might blame other things for these relapses (e.g. "flu"). They might just drop the exercise, or drop down levels of exercise, and start over again once they feel able. This of course is not graded exercise, as it is not graded if one keeps going backwards and forwards. But sometimes patients do this and still think they are doing GET, and still think it is helping, even if they are not getting any better overall and even getting worse. This is why objective measure of activity are so important (especially in research studies) in order to get a full picture of what is going on with the patient in terms of activity level.

    So, this doing less initially thing might be one of the reasons people sometimes feel better initially on GET programmes, they are actually doing less. They might also be pacing better as many of these programmes (including this one) advocate built in rest periods.

    That's all I could take for tonight folks, more torture tomorrow. And yes V99 I think some of the people running these programmes are somewhat brainwashed themselves, and they cannot see the evidence as they are so blinded by their thoughts]
     
  12. V99

    V99 *****

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    There approach of doing less initilally is very interesting, like you say Orla. Are they trying to keep people on the program for as long as possible, i.e. before exceeding their bodies physical limits.

    Also they keep using that word 'circle'. Of course we know there is no vicious cirlce. They appear be stuck in a vicious circle themselves, unable to accept new biomedical evidence. The starting point being their own abberant beliefs about what ME is.
     
  13. Cort

    Cort Phoenix Rising Founder

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    Thanks for giving us some documents on this is done. A real learning experience.
     
  14. Jerry S

    Jerry S Senior Member

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    Well done, Orla. Thank you!
     
  15. willow

    willow Senior Member

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    Great work Orla!

    Chilling is the right word.

    Like Elliot I live in the East Midlands. I've spent years avoiding my GP because of the menancing way she suggests CBT, 'addressing the health of the whole person' etc etc. Frankly every GP I've seen seems to have gone through the same dehumanising process.

    So thanks for the detailed info and all the easy to read dissecting- it's great prep.
     
  16. Orla

    Orla Senior Member

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    Chapt 8 Continued

    Thanks all, it is a bit of work going through it, but also interesting to see how they think and what they tell patients. Also this information was the basis of a GET study so interesting from that point of view (there are some things at the end which make this even more interesting, as I think they encourage the patients to adopt strategies which would make their research look better than it was).

    <They appear be stuck in a vicious circle themselves, unable to accept new biomedical evidence. The starting point being their own abberant beliefs about what ME is.>

    :D Yes. Ok, now back to their abberant beliefs. I hadn't noticed this last night

    [Orla - Why would someone be overwhelmed by symptoms if they just did activity at the level they were capable of? This make no sense.]

    [Orla - they are not advocating Pacing but GET, but every now and again throw in the word pacing. They seem to use pacing to mean having a set plan, and splitting up activites. Pacing can involve splitting up activities, and planning to some extent, but it is really about adjusting activities based on symptoms, which is definitely not what this crowd are on about.

    And notice again how they compare our symptoms to those experienced by healthy people. And the little lecture about atheletes not being silly enough to think they have a disease when they get muscle pain and "fatigue", even though it is completely different.]

    [Orla - they think we have control over fluctuations. This idea that we can just keep increasing activities until we are up to normal is a myth (unless a person is getting better anyway)]

    [Orla - note all the symptoms they are putting down to deconditioning]

    [Orla - this is handy, as if a patient tells them they are worried about feeling worse from the exercise plan, they can tell them the symptoms are just signs of deconditioning, and if they worry that they will make it worse. So basically the sympoms can be blamed on the behaviour and thoughts of the patient]

    [Orla - this is just so worrying. They are telling patiens to ignore their symptoms, that they will go away eventually. Criticially they keep saying that the exercise programme cannot do any harm, so it could be too late before the patients realise that there is a serious problem, and they might have pushed themselves into being very severe before they realise.]
     
  17. Orla

    Orla Senior Member

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    Chapt. 8 Continued

    They don't "get" delayed recovery from exercise, both physiologically and symptoms-wise. The symptoms can be worse the day or so after exercise, rather than immediately afterwards, and it can take a few days to recover. So it can take a few days to assess properly whether an activity is really ok or not:

    [Orla - I wonder if some patients end up resting more in the early stages of the programme? For some people planned rests might not have been part of their previous management? Though their idea of what a rest is a bit odd]

    [Orla - !!!! Of course if you are not so severe sitting might be ok for rest, but to advocate against lying down is a bit extreme - it is because of their obsession with deconditioning that they don't want peope to lie down]

     
  18. Anika

    Anika Senior Member

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    Mindbending

     
  19. Orla

    Orla Senior Member

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    Hi Anika, thanks. As you say, some of it just makes me laugh it is so bad, and then I rememer that some people coulod be taken in by it, or some of it, and could be damaged before they realise. But if we didn't laugh we would cry.

    I'd better not take too much rest, as it might perpetuate the physical deconditioning which is part of the vicious circle that is CFS ;)

    Orla
     
  20. Orla

    Orla Senior Member

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    Chapt 8 Cont. Which exercise for recovery?

    [Orla - Brace yourselves for this. As I mentioned before, I have put the quoted text in bold, underlined etc. at it is the way it is in the document]

    Orla - compare this with sometimes from the CDC website on aerobic execise

    [Orla - Back to Liverpool they want this exercise done a few times a day and on good and bad days!]

    [Orla - what can I say to this? Absolutely astonishing. Good days and bad?? They are putting pressure on the patients to keep going even if they feel bad, and telling them that they will slip back if they don't. It can be a real problem if patients keep trying to maintain activities when they feel worse]

     

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