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Lady Mar writes to Prof Wessely

Discussion in 'General ME/CFS News' started by Peter Kemp, Dec 4, 2012.

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  1. taniaaust1

    taniaaust1 Senior Member

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    Im not wanting to pick on you but that wee bit of your post I so disagree with, that I feel like I have to comment on it "privacy for those who may be well enough to work but dont want those in the workplace to hold it against them"

    I personally the whole time Ive been hanging out on the internet (early internet days and Ive I got ME 15 years ago) .. have never come across a ME/CFS person who is on the sites "AND WELL ENOUGH TO WORK" but is using fake names so that workmates dont find out that they are actually well enough to work. I just dont see that conning of others going on (not in genuine ME/CFS people.. thou I have come across two people over the years I believed was faking it and trying to use this illness to get benefits or off of work when they werent sick people at all.. I dont put them in with us thou as Im sure they didnt have ME/CFS and there will be always people out there trying to use fake illnesses to abuse the system).

    Have you truely ever come across a ME/CFS person who truely was well enough to work and should of been and hiding that they are well enough to be working?? **wondering if you are judging this to be the case for some people at this site.. some people who may be appearing t be okay due to being able to post okay.. may be far sicker then you realise.. .. I'd love to know where your comment which to me was very strange cause i havent see this thing really at all amongst our communities).

    That's the kind of things gov people eg social security depts and those who dont believe in our illness push.. that we are slackers hiding behind our illness and not really sick and should and can be working. That comment sounded like you'd taken on some of the views of very poor ME/CFS media in this area. Your comment there truely surprised me as as I said.. I just have never seen one with ME/CFS who was well enough to be working not doing so and trying to hide being well enough to. So was surprised to see that as part of a general statement on things.

    anyway.. Im not about to get into debate whether there are people here who are weller then they are making out to be as I just dont believe that is at all the norm in anyway but just wanted to express I have never seen that and if u do want to share where that comment came from.. I'd love to hear.
     
  2. Adamskitutu

    Adamskitutu *****

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    Oh. But that letter seems pretty clear on what those signatories believe. I'm following a blog that you and Angela Kennedy are commenting on at the moment where she has shown the whole letter is actually devoted to calling that IOS article (including The COM's comments) harassment, false allegations etc.

    http://jdc325.wordpress.com/2012/11/17/mecfs-harassment-of-researchers/#comment-15791

    I'm interested to see how that letter could be 'corrected'.
     
  3. Firestormm

    Firestormm Guest

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    Because you banana - you need to read Lady Mar's letter. The apology she received from White. In it I think he said - words to the effect that - 'the published letter was not complete' i.e. the editor's edited it. It appears that the IOS were to make reparation for this but that it hasn't happened. Lady Mar took the implication from that letter that she was also being seen as a 'harasser' of Wessely, but White has said this wasn't the intention. Believe it or not I really do not care.
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont even know how i would even get social security for cfs/me, 99.9% of docs dont even really know what it is. Before any antiviral treatments i started and improved, i was considering disability pension but to get this pension i was thinking i would have to go down the depression line. I dont know how one could fake cfs/me and get disability pension, its so hard to get when one does have it. Also having assets(owning 1/2 a house) and my wife working part time would also greatly affecting any sort of payments, plus i think they would have pushed me into some type of Simon Wessely torcher camp as well as a boat load of antidepressants which i wouldnt have been able to tolerate. Theres alot easier things to fake if your after a disability pension, my plan was to fake depression to get a pension for cfs/me??
     
  5. beaker

    beaker CFS/ME 1986

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    Oh gosh. a case of miscommunication.


    Perhaps I should of been more specific ( and a great example of the ease of misunderstandings on postings. )

    2 situations that I was trying to address .
    First those who were on are attempting to get disability and on the net:

    I am all too aware of cases where because a person -- disabled with me/cfs is found posting online --- are spotted by employers or investigators from LTD co's and it is brought as evidence against them .
    The LTD's are not shy about "spying " on claimants in order to deny disability benefits to those who very much need and are qualified. There was one very prominent case a few years back, where LTD found FB postings of claimant and -- can't remember if they took them to court or it was a case already under judiciary (3rd step) review for benefits. They argued that if this person could be on their computer/internet, they were well enough to be employed. (which to be very clear is garbage)
    It caused quite a ripple through the community at the time, and folks got very shy about openly posting for fear of inviting hassles from insurers, and SSA

    2nd : those who are well enough to hold a job, but wish to hide their illness from employer for fear of being downsized or cut or looked over for promotion or belittled or well you get the idea...... the list goes on.
    I don't mean they are on the net goofing off and avoiding work. I mean they are working and don't want anyone at their work to know they are sick for various reasons. so they don't wish to post in forums or on FB their real names.
    (if you read back, I gave the example in the back and forth on this issue, that back in the 80's when "screenwriters' disease was another name for this plague, actors hid their illness b/c they could not be insured to make a film if they were dx'd with CFS/ME. no insurance no work. so they would not come forward to speak up for the cause)
    I was particularly commenting on this b/c of what heapsreal posted in response :
    I hope this clarifies for you and that you realize what you wrote was not at all my intent. I think we're really on the same page ! : )

    Best -
     
  6. alex3619

    alex3619 Senior Member

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    RE: Angela Kennedy

    For anyone seeking a better understanding of these issues though, I can recommend her book. While I have been investigating many related issues for some years there were still a lot of things I was not aware of that she explains in detail. The book is an expose of psychogenic diseases:

    http://www.amazon.com/Authors-our-own-misfortune-explanations/dp/1479253952

    http://forums.phoenixrising.me/inde...ic-explanations-for-physical-illnesses.19199/

    The most negative thing I can say about the book is that some arguments in some sections lack depth. They need work. On the other hand this is not the case for most of the book. I find I will need to reread this book several times, there is so much material in it.
     
  7. beaker

    beaker CFS/ME 1986

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    Heaps :
    Something that you wrote got me laughing. I hope you get a laugh too. God knows I make a gazillion word/ brain malfunctions a day......

    here's your quote w/ my bold :
    all I can envision in my head is them handing you some chickens. :rofl::)
    I got a good giggle out of it. Hope you do do too. I sure needed that !!

    night
     
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  8. DaiWelsh

    DaiWelsh

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    Not wishing to put words in beaker's mouth, but I read that bit completely differently - as people who are working and do not want their employer/colleagues to know they have ME (for fear of prejudice), not people who could work but do not want to and want to keep that from former colleagues or the tax paying public as (I think) you are reading it?

    Similar to the following point about family - if you want to bemoan a lack of support from family without them seeing it and being hurt.
     
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  9. beaker

    beaker CFS/ME 1986

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    Thank you. exactly !
     
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  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Maybe i meant chicken feed, thats what im running with anyway. i usually go back over things i have typed as i sometimes put words back to front or totally wrong words like u mention like sail and sale etc I like to call them brain farts. if i didnt go back over what i have typed there would be alot more of my posts to laugh at, i suppose its showed valcyte hasnt cured all my cognitive issues ;)
    heres the giggle:lol::lol:
     
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  11. Firestormm

    Firestormm Guest

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    Apparently, this is the latest letter from Mar to Wessely. Posted on IiME Facebook there is currently no link to a definite source:

    I believe the quote in the second sentence relates to the 'model' used in the 2002 PACE CBT manual referred to here: http://forums.phoenixrising.me/inde...bt-in-me-cfs-compiled-by-tate-mitchell.15184/

    Namely:
    I don't have a specific link to that particular model to hand - if you can help I'd be obliged. Thanks.

    Will add link to letter's source when one becomes available. I dare say the reply will be predictable and along the lines of this being a 'model' used in a trial to see what the result would be or some-such. That's only a guess on my part. If the model had worked I would think the results would have been better than they were. Of course I cannot know or say how effective this aspect of the model was implemented by the practitioners.

    If anyone can confirm that this quote is repeated in the actual manual that was used in PACE (and not one from 2002) that would be cool too. Thanks in advance.
     
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  12. maryb

    maryb iherb code TAK122

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    I hope the Lady keeps going with this one, she's definitely got him on the back foot, please answer the question Simon, lots of people I'm sure are interested, not only patients. I can only hope the message is filtering through even slightly that he is a slippery manipulator of the truth.
     
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  13. biophile

    biophile Places I'd rather be.

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    Firestormm.

    An almost exact version appears in the official CBT manual for therapists:
    http://www.pacetrial.org/docs/cbt-therapist-manual.pdf
     
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  14. Firestormm

    Firestormm Guest

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    Thanks Bio. Yeah I took the plunge and reacquainted myself with the manual from 2004 that was used with the Trial.

    Am shattered and off for a rest - but I posted links and comments here and immediately beneath that comment too if anyone's interested in discussing this aspect of things further.

    For the record and to save people reading my BS :) I hope an answer is forthcoming, and I also do not believe this 'model' is any different that others of CBT applied elsewhere and never really have.
     
  15. Wildcat

    Wildcat Senior Member

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    PACE Trial PROTOCOLS and CBT manual for CFS) therapists :
    "According to this model, the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviours (avoidance). These beliefs and behaviours interact with the participant’s emotional and physiological state and interpersonal situation to form self-perpetuating vicious circles of fatigue and disability."​

    .​



    Firestormm wrote: "I also do not believe this 'model' is any different that others of CBT applied elsewhere and never really have."

    .

    .


    Really, Firestormm - according to your reasoning, the following would be the model for use of CBT with cancer and heart patients:

    "...the symptoms and disability of Cancer/Heart Disease are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviours (avoidance)."

    .



    .
     
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  16. Firestormm

    Firestormm Guest

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    You know in a sense, I do. I know it seems 'daft' but there we go. It all boils down to this notion - not mine - that in order to improve someone's quality of life it is important to at least challenge these things that could be holding them back. Like an examination of fears - are they realistic? are they not? That kind of thing.

    Mum has for example osteoarthritis and is often screaming in pain and has very bad nights. When she went to see her therapist for work including CBT - this was also something they talked about. Of course when Mum returned I recall her saying pretty much the same as me "Huh! She doesn't know what's she talking about. Stupid woman!" :)

    And then there's CBT with MS. I'd like to read a similar manual or study used for them, perhaps, or any other condition such as cancer - yes. Of course ME is still unfortunately attracting this "medically unexplained" moniker but I still feel that if the model was in any way 'good' it would have produced better results than it did.

    Thing is - what's the alternative or what improvements could be made? Seems to me than improvements are made on the ground and in the clinical delivery - when all of this is personalised and made more relevant and realistic. But that's only based on my experience. I know others (friends) whose experience has been bad.

    Seriously though, and whilst I would not have written the CBT manual using the words that they did - I think that at least in part we all visit and think about those 7 points anyway (page 68-9 I recall). "Am I staying at home because I fear going outside and hurting myself? And if so - to what extent is this reasonable?" You know? That sort of thing.

    The Perfectionism thing - well when I read the Manual it did make me laugh. But then when I do do things am I trying to do too much and to do things perfectly? Again is this something that is reasonable - e.g. aiming to do my best and getting wound up about not being able to achieve that anymore or is it something that might be preventing me from doing anything. Am I thinking - "Well, there's no point me even trying that because I'll mess it up!"

    It's hard to explain I suppose unless you've been in therapy that involves CBT. But even without any physical diagnosis the same methods I think are used. My last therapy that involved (I was assured) CBT lasted for 13 weeks - so 13 sessions - but I was really screwed up following yet another relapse and a saving by my family from my flat and return to the family home.

    I was a mess. Were there things that I wasn't even attempting that might have improved my quality of life? Yes there was. Is this the same for everybody - No I don't believe it is. Sometimes I would get so worried about things that all I can see is the worry - especially matters relating to my future - and that worry is in itself paralysing.

    I don't know, Wildcat, I tend to view all of this as a necessary thing to endure. Examining one's approach to living with a disability is bloody hard don't get me wrong - I mean 13 weeks for heaven's sake. And then they asked me to help trial a new NHS "CBT and Mindfulness" course in group.

    That was actually quite interesting and again there was no sale of it being a cure or that our physical (and some mental) health problems were not 'real'. In fact - and I haven't just pulled this from my arse - one of the chaps who was in group with me had been in the Manchester plane crash and was one of the few who walked away (well in part).

    A month after the sessions ended we were all still in touch - and he'd been back in a plane for the first time since that crash. Others there were dealing with pain - cancer and other problems. Basically, we'd all had everything medicine could really do for us and so Mindfulness and CBT was being tried. It helped. Would have helped me more had I not already studied the techniques previously I think, but it was good to see how the same stuff I wasn't dealing with, they weren't dealing with very well either.

    Different diagnoses same kind of issues holding us back from a better quality of life. See what I mean? But that's not this manual is it. And yes it makes for harsh reading. I do wonder if this model had been compared to a model that fully recognised a person's physical illness and then went on to look at how they dealt with it - might not have produced better results under Trial conditions?

    It's been a while since I read that manual though - so it could be that this positive reinforcement was part of it. Can you let me know? Am rather bushed tonight. Thanks :)

    n.b. The 'perfectionist' in me suggests that I should also perhaps read the participants manual that accompanied the PACE Trial. Maybe contained in there there is more enlightenment or indeed more damning evidence. I haven't ever read it. Just wondered.
     
  17. maryb

    maryb iherb code TAK122

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    Firestormm - for me this is the point, you said,
    'Basically, we'd all had everything medicine could really do for us and so Mindfulness and CBT was being tried'
    yes everything that the psychs had twisted NICE into agreeing to, no viral investigations etc etc. No you hadn't really had everything that medicine could do for you just what they said you could have, which is not acceptable any longer.
    And as for the points from the manual, no, no and no they don't apply to me.
     
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  18. Firestormm

    Firestormm Guest

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    Forgive me Mary, but I believe that I had. I believe that I am on the medications that can help me now. Took a long time to get them and that was only through my ME Service and Professor Pinching. And yes he had also prescribed anti-virals too I understand to others. But there comes a point where continuing investigations cease. Unless new symptoms present. It's a matter of reasonable I suppose and of course expense. Until science points the way, I don't think we will all be e.g. scanned or investigated for all of the things that some indicate are worth pursuing. But I do believe that NICE could do more in terms of indicating more appropriate medications - yes. Absolutely. And that's one reason why I supported the ME Associations latest campaign to get their 'clinical issues' booklet out to as many GPs as was possible :)
     
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  19. maryb

    maryb iherb code TAK122

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    I doubt Prof Pinching ever prescribed more than a couple of weeks of a/virals which in our case wouldn't even reach them never mind knock them out. I'm glad he was able to help you though, but he's now retired.
    Science will never point the way in this country until we get our illness out of the control of psychs.
    We have to look to other countries putting money into research and to finding the cause of our illness.
    I will not support NICE in any way shape or form. Money for old rope sitting on that panel, counting the money and doing what they are told to do.
     
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  20. Firestormm

    Firestormm Guest

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