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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Simon Wessley replies

Discussion in 'General ME/CFS News' started by maryb, Dec 12, 2012.

  1. Enid

    Enid Senior Member

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    There is a lot going in parliament - All party group Lords/Commons - now do you think my local MP bogged down with immigration problems UK has even the time. Back those already involved with ME and it's dire history our best way.
  2. Bob

    Bob

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    I think it would be overly-confrontational, and possibly against forum rules, to trawl through past posts, and quote examples.

    So I made a general observation, based on my perception of some comments and discussions.

    Judging by the number of 'likes' that my comment has received, I'm not the only person who has perceived some posts and discussions in this way.
    Merry, Valentijn and Roy S like this.
  3. Bob

    Bob

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    We have a few drugs that have shown at least modest results, at least in subsets of patients, at least in small studies:

    Rituximab. Valacyclovir/Valganciclovir. Ampligen.
    heapsreal likes this.
  4. alex3619

    alex3619 Senior Member

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    (My bolding)

    One possible reason for this is corporate management interference with editorial policy and science. I am about to blog on this, and it specifically is about The Lancet. These issues have been raised by a former editor of the wider publishing group of which The Lancet is a part.

    On more general issues, I am glad to see the discussion is looking more at politics. It is however still focusing on government minimal response ... what they can get away with and how to make them do that much ... rather than what can be done to make them actually act of their own volition to meet their moral, ethical and legal responsibilities.

    On the Countess of Mar the only relevance to her position as a Peer is that she has a louder voice. If she were a farmworker on a remote and forgotten island farm, then I would still applaud her efforts. If the Good Samaritan of Biblical legend had not acted to help when he saw an injustice (in the story, I have no knowledge of the historicity of this), we would be missing an important Christian parable. Was he elected? No. Was he representative of some relevant group? No. He was someone who saw an injustice, and saw someone who needed some help, and acted. We could all learn from that.

    One of the things that is missing in this debate is a discussion of morality. Many in the UK establishment could easily be painted as immoral, they have set themselves up for it.

    My research on this issues is ranging wide, though I hope to focus on more specific issues starting next year. I am having to read up on economics and UK and US constitutional law! These issues go beyond ME and head into failings in the practice of democracy itself. The government has a moral responsibility to act in the interest of the people. In many respects it has ethical and legal responsibilities too. Failure to do so is endemic, and across the western world its getting worse. Against this is a counter-force of real-world and online political activism, as well as a gradual and very slow shift to more accountable and transparent government.

    Bye, Alex
    snowathlete, Merry, Valentijn and 2 others like this.
  5. user9876

    user9876 Senior Member

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    I'm sure most MPs have come across ME but I would be very suprised if they take much notice or follow what is happening. Remember many people come to MPs for help and write over many issues. Getting past the platitudes is difficult.

    I was thinking that just having someone ask questions matters. When I was a civil servant many years ago I got the impression that trying to be accurate mattered when a question crossed my area of work. Making officials notice and think a question may be asked might make them more careful. I think there is some interesting psychology in this area but its not comming to mind at the moment.

    I think scandal is too strong a word for what I intended to say. Its about those in power being seen to have ignored something or being out of touch with the world. I don't think a strategy of blame is useful but a strategy of offering good rewarding positive options often works.

    Rituximab possibly ampligen. I'm not convinced about antivirals.

    We could ask our MPs to fund a Rituximab trial. I think there are also issues of diagnosis, care and how people are treated. How about ensuring the equality act includes people with chronic illness.

    How about some basic training for GPs.

    I'm don't think letter writing to MPs really works unless its done on mass and written by individuals. There are so many different campaigns looking for attention. We need a way of capturing peoples, the media and MPs imaginations.
  6. user9876

    user9876 Senior Member

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    Have I missed the discussion of Wesselys latest reply

    http://www.meactionuk.org.uk/Mar-Wessely-correspondence-update-171212.htm

    Firestormm likes this.
  7. Firestormm

    Firestormm Senior Member

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    Thanks User. I hadn't seen that. Have been otherwise engaged of late. Well that clears things up rather nicely I would venture. Not that everyone will approve I don't suppose. A better reply that could have been envisaged and certainly predicted by some I should think.

    Missed Lady Mar's subsequent reply (on the link above):

  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    It sounds like he is on the back foot. If he truly believed that his theories help improve people's function than thats ok but why does he have an avoidance for the physiological abnormalities found in cfs/me like chronic infection, immune abnormalities that have been found, these abnormalities are closer to the cause of this illness. Wouldn't treating the illness be more appropriate then helping people to live in a crappy world??
    Kati likes this.
  9. Firestormm

    Firestormm Senior Member

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    Early riser too Heaps? :) I wish they'd get some more effective sleep treatment. If they can pull that one from the latest e.g. MRC research then I'd be a happy bunny :)

    Wessely, rightly, says that there is no effective treatment other than the two mentioned. He has never said - to my knowledge - that more research shouldn't be conducted. And - as I've said - the expert group (comprising White and Crawley) approved this latest direction in research at the MRC.

    Even if e.g. a more appropriate and effective sleeping tablet was forthcoming - CBT and GET - would remain. I hadn't read Mar's reply before commenting above - missed it (should have checked the link that User supplied).

    We know what Mar is trying to do. Wessely - as a psychiatrist - is trying to say that if one believes that ways in which a patient (any patient) manages their illness and thinks about their illness can lead to greater loss of quality of life - then to propose a model which essentially says 'we can help support you to overcome these unhelpful beliefs' is a good thing - for some people who perhaps need this support.

    Inherent in this model of course is the need to suggest that unhelpful and limiting beliefs can be overcome or diminished. When specifying what these unhelpful and limiting beliefs might be - the risk of course is that people will (and have) said 'you are diminishing the reality of my condition and me!' If you or I for example, are clinging to the notion that nothing can help us move beyond where we are now except a biomedical cure and so we will sit here and suffer whilst demanding help - but only the help we deem appropriate - which is not available of course - this would be deemed unhelpful I suggest.

    And let's be frank here. There were people clinging to the notion that they had a retrovirus and that the only help was treatment with antiretroviral drugs. Of course this is based solely on the internet - that great and dependable reflection of truth ;)

    What Wessely and others do not I think adequately reflect is the degree to which these interventions are not proving to be effective or that they are not inherently limited themselves. Even for people who do want to engage with them, or indeed find them helpful, it is not a means to overcoming the condition itself. At least not for everyone by any means.

    Personally, I still regard these as therapies - I know it might not make a difference in terminology - but to me they are not treatments for the condition itself.* Like any therapy the effect on the individual is, well, individual. For some - I have no doubt whatsoever - what is learned and how these therapies can and do help - is enough to help them to better enjoy life and even to e.g. return to some form of employment. It all depends on the individual and on the therapist and their professionalism and the way in which they can 'gel' with the patient etc.

    But we can only find out if they will help us by 'sucking and seeing' for ourselves. For some they don't help. For some they don't help when first tried. It's down to the individual to decide when and if to try them out. As Wessely says - nobody is forced to do so.

    Edit:
    This is an unhelpful illness belief - probably. I need to work on that one obviously :rofl:


    Edit:

    I posted this on one of the other (many) threads surrounding this issue. It was my first 'hit' when looking for CBT and MS. That review does go on to look at the consideration being made to CBT and it's effectiveness in helping to modify the effects of the actual physical cause of MS i.e. the neurological cause. So, even if ME is found to have a definite neurological (or other) cause - as I said above - this will not automatically see the removal of CBT as a recommended therapy.

    Further to the above - sorry - not everyone will of course be referred for CBT (or GET for that matter as in my own case). I suspect there are several reasons for this but one will definitely be that the referring physician and the patient simply feels they are not going to be appropriate or indeed useful. Who here doesn't feel they are managing as best they can? Maybe we are - maybe though - we are not.
  10. user9876

    user9876 Senior Member

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    I think they seem to be moving into MS with a biopsychosocial perspective claiming it is a cure as well.

    Also see
    http://www.medscape.com/viewarticle/772589_3
  11. user9876

    user9876 Senior Member

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    If we were to take wessely's cards analogy I would have thought the most effective thing would be to have an ocupational therapist look at your activities of daily living and suggest adaptations and techniques to make them easier so that you minimised energy usage on those activities and could therefore do other stuff with your cards.
    alex3619, Shell and Valentijn like this.
  12. Firestormm

    Firestormm Senior Member

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    Yeah. That's part of it for sure. If you are let's say 'severe' or 'very severe' then a review by a relevant professional would result in aids and adaptations. What then? How do you better manage the condition itself in terms of the way you think about it?

    I said about sleep above. Well there's nothing I can do about it. I haven't been able to stop the vivid dreams for example and have had to learn how to best respond to them along with the sleep disruption in general. No 'aid or adaptation' is going to help me to do this - or to learn to live with the fall-out from this aspect of the condition either.

    But some of my - perfectly understandable - responses to this part of it can be and have been better managed - I like to think and some have been done by me without any specific intervention. For example, a shitty night does not prevent me from doing stuff during the day. I might want or feel a need to curl up in bed and justify this by 'another shitty night' but I don't - certainly not as a rule.

    This response does not undermine my condition in the least. Neither does overcoming my previous inability to brush my teeth. Why should it? If there are things that I can learn about my own responses to this incapacity - then I want to learn them. As I said before - it is bloody hard to analyse let alone self-analyse - but I would suggest to you that we all do this anyway. It's just that with professional help and direction it can prove more useful.

    Indeed I would suggest that we all are 'guilty' of way too much over-analysing at times. All this concern about psychological papers and such - it should come with a health warning. It does mess with your mind. Though realising that can and does help - rather a lot (if my own experience is anything to go by).

    I used to get pissed off by these papers. The language they used did seem to undermine the genuine nature of my suffering and my claim of disability. Hell I used to feel bloody awful being cared for as I am by my parents after reading this stuff. But after engaging with e.g. those in the Cornwall ME Service - I have come to realise what I read in a paper is not undermining the condition or my disability at all.

    Me is unique. Always has been. Because NICE only really recommend activity management, CBT and GET - we naturally feel that we are being afforded the bad hand in a card game. But reading the actual Guideline as I have done thoroughly and discussing it pretty thoroughly also - along with those actual treatments above (and including symptom management administered on an individual basis by a GP or specialist physician) - I don't feel ME is being undermined.

    If Ampligen gets approval - I don't think it will but never mind that for now - if it does then not all patients who take the medicine will feel it has done them any good whatsoever. Some will feel it has. To what extent this might be down to some overcoming of the actual cause of ME - or perpetuation of it - we will never ever know. And yet patients who do feel they are able to 'do more' or 'return to work' will be convinced that Ampligen did it.

    Why then is it different for those who feel that CBT and/or GET and/or Activity Management and/or prescribed symptom management pharmaceuticals - have had similar outcomes? Dos it really matter to the individual concerned? I doubt it very much and yet it seems to matter a great deal to those who are adamant that CBT and GET have no place whatsoever in an overall treatment programme for ME.
  13. Valentijn

    Valentijn Activity Level: 3

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    Wrong. There are -causes- to sleep problems, and in many cases there are relatively simple fixes to go with them.

    I think the general attitude of "there's nothing I can do to fix it" is completely incorrect, and it seems to be stopping patients and doctors from looking much further than whatever the NICE guidelines say is helpful.
    PhoenixDown and Merry like this.
  14. barbc56

    barbc56 Senior Member

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    Some psychiatrist would say that CBT or some type of therapy would help that "attitude". Emphasis on may as there are physical limits within an illness. For example you wouldn't expect someone who has just had a heart attack to talk themselves into running a marathon. We have to be realistic. The opposite type of thinking, that there must be something more to help us has led some patients to use alternative medicine which may be harmful in themselves or harmful because the patient might forego getting appropriate treatment. It can also lead to doctor shopping.

    As far as sleep goes there are conditions where there are not simple fixes because of the way the brain is wired. The one that comes to mind is narcolepsy. Restless legs syndrome is sometimes helped by medication but not for everyone. Sleep disruption or sleep seizures are also be difficult to treat as well as sleep walking and acting out dreams. I can't remember what that is called.:confused:

    Speaking of sleep, I need to do just that as it's 5:00 AM and I can't fall asleep. Unfortunately, I sleep just fine during the day. :rolleyes:

    Barb C.:>)
  15. Firestormm

    Firestormm Senior Member

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    As Barb said. But I'm always interested to hear about other treatments that I might not have encountered despite engaging with any and all practitioners I have been referred to. Sleep dysfunction including vivid dreams remains an integral part of the chronic phase of ME. The research being undertaken by the MRC funded study is the first that I know of which will look specifically for a drug treatment.

    Other measures I take do involve more than a low dose of over the counter sleep aid - of which my doctor for example is fully aware - but they are simple measures and one of which is to 'get up'. Generally, when in the past I had problems maintaining sleep, I would 'toss and turn' in my bed determined to get back to sleep. I would become distressed over time. And angry.

    I don't do this anymore and the other measures as well as the Sominex - help me to get more than 1-2 hours at a time. Not always but sometimes. Nothing has prevented the vivid dreams or the sleep paralysis or indeed the 'fitting' that may or may not be connected (I do have an Epilepsy diagnosis). So if you'd let me know what it is you think might additionally help I'd be obliged - because this hasn't changed (except during acute phases perhaps when I oversleep) for my 15 years. Thanks.
  16. Valentijn

    Valentijn Activity Level: 3

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    Have your glutamate levels ever been tested? Or your other neurotransmitters?
  17. snowathlete

    snowathlete

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    "And so I say that in my opinion as a researcher and clinician, either CBT or GET are the two ways in which we can currently help you. I share with them that these are currently the best treatments that we have, that they are not perfect, but are safe"

    To use his card analogy, GET is the JOKER in the pack.
    I have experienced it first hand and I can state categorically that it is absolutely not safe for everyone. Perhaps not for most. It made me very ill, very quickly and for a very long time and I have heard others state that they had the same experience as me.
    alex3619, allyb, Shell and 2 others like this.
  18. Valentijn

    Valentijn Activity Level: 3

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    I think this is a very good point.

    Something else that we should keep in mind is that when Wessely and NICE and others advocate the use of CBT for treatment in ME, the studies they use to support their assertions do not involve coping-CBT: they're talking about false-illness-belief-CBT.
    alex3619, PhoenixDown, allyb and 4 others like this.
  19. lnester7

    lnester7 Seven

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    I respect your opinion. This rant is based on my experience and my frustrations on the topic.

    Here is my problem with it all, It works some, when I reduce my activity and PACE, sure my symptoms are reduced and I feel better. Unfortunately, for me not to have much symptoms (some symptoms I cannot avoid no matter how much I rest) basically all I can do in a day is get a shower and just stand up to eat and stretching, and with luck a 5min walk.

    But the question is, is it practical. HELL NO!!! Who is gonna pay my bills while I "pace myself" that is where the issue comes PUT THE MONEY WHERE YOUR MOUTH IS. Then can I get disability while I "PACE"?!?! I already tried that, and It was a hassle for the insurance to recognize PACE and let me take the time off I needed. I was unable to be vertical due to POTs, I had medical records and an exercise test done proving my inability and I had to go back to work because the insurance THAT I PRIVATELY pay suspended the benefits. So yeah I have a problem with Unsustainable or unachievable solutions.
    Shell likes this.
  20. Roy S

    Roy S former DC ME/CFS lobbyist

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