ACTION FOR ME ARE SO NEGATIVE

Discussion in 'Fibromyalgia Main Forum' started by AFair, Dec 8, 2005.

  1. AFair

    AFair New Member

    Cant believe how negative Action for ME are. My boyfriend is now fully recovered thanks to Mickel Reverse Therapy he thought it would be inspiring for others if he sent his recovery story to the Action for ME Magazine. They wrote back to say they would keep it on file. My friend who also had ME whom I met when my Boyfriend was ill also decided to under go Mickel Reverse Therapy she to is fully recovered and also decided to send her story again a letter back to say they would put the letter on file. Why dont they want to report sucess stories and give people hope??????

    That Magazine is just full of negative articles about people committing suicide because they were so ill. When my boyfriend was ill it got to the point were i would hide the magazine from him when it arrived as i didnt want him to feel any more depressed.

  2. davebhoy

    davebhoy New Member

    those newsletters made me fell worse. they drove home the message that i would never recover and didnt offer any hope. it goes straight in the bin now.

    glad to hear about your boyfriend - i have been following his progress through your posts. rt didnt work for me but he's proof that it can for some and for me the hope that offers i worht a thousand articles on what supplements you whold be taking.

    thanks for the posts - especially as it isnt you who have this condition.

    do you think you could get your boyfriend to come on and speak to the doubters?[This Message was Edited on 12/09/2005]
  3. Smiffy

    Smiffy Member

    What puts me off considering paying £80 a session for the Mickel reverse therapy is that no-one, not even patients who say they've recovered, seems willing to talk about what is actually involved in the therapy. Are the therapists afraid of something? If you or your boyfriend could tell us, I'd be very grateful. Thank you!
  4. Smiffy

    Smiffy Member

    ....bumping in the hope of an answer
  5. angeldust

    angeldust New Member

    Perphaps they have received more letters from subscribers saying that RT is a waste of money or perphaps their Medical Advisors feel it would be unwise to promote an unproven therapy that is quite costly. In fairness although these publications can sometimes be negative, they have provided me with lots of really helpful info on nutrition, alternative therapies, support groups, claiming benefits etc. I do not find the contents depressing or unbalanced.

    I'm glad your boyfriend is keeping well, if I were you I wouldn't worry about it, get on and enjoy your lives and your good health!
  6. Rosiebud

    Rosiebud New Member

    I dont take on board or believe everything thats written but it has helped me.

    I have strong doubts about Mickel Reverse therapy too, like Smiffy, I wonder why it's all so hidden.

    I'm glad your boyfriend and friend have recovered but remember that many people do recover within the first two years if it's been a quick onset. Thats by doing nothing.


    love
    Rosie
    [This Message was Edited on 12/11/2005]
  7. Smiffy

    Smiffy Member

    ....still hoping afair or her boyfriend will answer my question, the therapy does cost about $160 an hour.
  8. davebhoy

    davebhoy New Member

    if you do a search under my username you will see that this has been debated at length before and i have described the treatement.

    the basic premise is that cfs is a malfunction of the hypothalamus caused by external ind internal stressors. the hypothalamus is very imprtnat in controlling a number of different things. rt says that it has started to malfunction because of what we have been "telling" ourselves and what other events have "taught" us.

    the treatment is a kind of reprogramming of the hypothalamus. every time symptoms become more obvious or get worse a message has to be read. the real trick in all this, apparently, is finding the correct message that the hypothalamus or the mind/body understands to let it know that any "danger" or dis-ease has passed. or it is to say that the hypothalamus' response is no longer valid and that a different response is appropriate.

    it really is as simple as reading a message to oneself whenever symptoms get worse or become more obvious.

    in the past this explanation has provoked outrage and hostility on this board. i have no problem with that as i often think we can get too comfortable in our own world and our own community. i tried this and it didnt work for me - i didnt get on with the therapist who made me feel a bit bullied and then when i subsequently contacted his partner dr mickel his response made me feel like he didnt care at all. overall the experience made me feel like i had been taken a bit for a ride. however it does seem to work for some people and i think to ignore that totally is irresponsible and foolish.

    as i have said before. i dont care what they tell me i have, how it happens or why it happens, as long as i can get to a full recovery.
  9. tansy

    tansy New Member

    whatever line AfME take, or what they publish in their journals, some won't like it. Expectations vary and so do priorities. How we interpret what we read is individual too. For instance even if told the odds of recovery were low, there being some possibility no matter how small could have been enough. Just the possibility of recovery would encourage me to maximise the odds in my favour. Prior to being ill I had survived a life threatening health issue against the odds (1 in 4), and likewise my recovery was better than expected; I had every reason to assume I would recover from ME too.

    When I was first Dx with ME the info I got was from the MEA (AfME did not exist then) led us believe the odds of ME resolving were high, this meant most of us had a positive attitude regarding the final outcome of our illnesses; They had advice on rest and not overdoing it, but little on other areas of self help or non mainstream Tx which might help.

    AfME have covered RT including a small trial but did so through their affiliated organisation for young people - AYME.

    Organisations like AfME get claims of cures all the time; RT and MRT are no exception. They also receive criticisms about RT and the claims made over it's successes. Feedback at a grass roots level is not showing the same %s, and there are numerous reports similar to Dave’s, which means the overall picture is very different to that being painted by RT and MRT promoters. If AfME are getting similar feedback, then waiting before publishing any more on RT is understandable.

    AfME have quite rightly been criticised for aligning themselves with the psychologisers, it may well be they are taking more notice of these complaints now. Whist the creators of RT and MRT insist ME, CFS, FM are physical illnesses; they use a psychological method of treating it. RT and MRT are very similar to the CBT being offered to PWME/CFS through many of the recently set up centres nationwide, their CBT is provided free of charge. The only difference is RT practioners insist the illness is physical, which makes their their theory more pallatable, whereas some of the CBT being offered is based on ME and CFS = somatic disorders.

    There is no specific test for ME and CFS yet and the diagnostic guidelines have been watered down over the years, it now covers a wide range of health problems. This factor can complicate finding the right Tx ofr individual patients.

    I have no doubt MRT and RT work for some who have been Dx with ME and CFS and who have similar symptomology. What many others and I have problems with is the claim it’s a cure providing clients complete the course. It is now acknowledged MRT and RT can take a long time, the cost means those gaining no benefits will stop attending sessions; this is being interpreted by RT practioners as not completing the course.

    Unfortunately the suggestion lack of the necessary commitment leads to treatment failure conveniently provides a get out clause when RT and MRT fail. The same explanation and get out clause are being used when CBT and GET fail too. So if the Tx fails, it's not the Tx that's wrong, it's the patient's fault!

    Tansy[This Message was Edited on 12/12/2005]
  10. davebhoy

    davebhoy New Member

    i agree about rt. it really is a shame that they are not more transpartent about their methods, their claims and their success rates. it does tend to invalidate anything good they do.

    like i said before, i do think they are onto something but having had contact with both partners i was left with the feeling that they are closely guargding what they beleive to be some sort of secrte so they can make a lot of money out of it. anyone who threatens their hypothesis is dealt with pretty abruptly.

    as for afme i know they do some good work, but i think their pr stinks and their magazine really makes me feel down. it is important that they represent the me community but i feel they need to give us more hope by speaking to more people with recovery stories even if they are only partial.
  11. tansy

    tansy New Member

    AfME used to be known as the ME Action Campaign. In MEAC/AfME's early years the journals were better balanced; it IS possible to cover non orthodox Tx with their successes and failure, provide reports on research, advocate for official recognition and research, and educate.

    What individual PWME/CFS want from Interaction and AfME depends very much on the severity of their symptoms and which ones are having the greatest impact on their lives. Anyone who is actively involved in a patient charity needs to be able to make judgements based on the bigger picture, and accept that no matter how hard they try, they will always be wrong in some of their members opinions. What patient organisation officials should be doing is acting in the best interests of those they claim to represent; most PWME believe AfME are not but instead are following their own agenda.

    love, Tansy