Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Has anyone tried The Optimum Health Clinic - if so, what did you think?

Discussion in 'ME/CFS Doctors' started by hanhanhannah11, Oct 15, 2014.

  1. hanhanhannah11

    hanhanhannah11

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    Hello,

    Over the past few years I have been determined to recover from my CFS/ME and have consequently invested a lot of time and money into trying various different treatments in the hopes that something will make a difference. I've always been aware of the optimum health clinic but i've never really explored it, however my condition has worsened over the past year and now I am quite desperate to see changes. I am worried that my desperation to see improvement might cloud my judgement, and I don't want to invest my energy into something that will not be helpful, so i decided the best thing to do is to ask around and find out what other people think.

    I am wondering if anyone has had any experience with the clinic (http://www.freedomfromme.co.uk/) and if so, was that experience good or bad?

    I believe they claim that they combine the best of the current ME/CFS recovery techniques which is something that interested me about the clinic. Also, on their website they give the impression that they view people holistically which is something that is very important to me.

    And finally, if any of you have any recommendations about things I could try (preferably based in or around London) I would be incredibly grateful. It's been quite a tough year and I am starting to feel quite hopeless.

    I am really looking forward to your replies!

    Hannah x
     
    justy likes this.
  2. A.B.

    A.B. Senior Member

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    It looks like a nest of psychobabblers. I wouldn't expect any real medical treatment. In less polite terms, a scam targeting vulnerable patients.
     
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  3. ukxmrv

    ukxmrv Senior Member

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    I had a bad experience with the OHC. Filled in a questionnaire for them online and then had some correspondence. Also met with one of the therapists (although that the time I didn't know she was involved)

    The impression I gained was that this is a money making enterprise based around the idea that CFS and ME are lifestyle problems similar to burnout or mainly due to overwork or emotional issues. If this is the case with you, then it may be suitable.

    In my own case after an acute onset viral ME that is helped by antiviral drugs and immune modulators and is resistant to previous attempts to help symptoms by lifestyle changes, emotional work, diet changes, supplements then the shortfalls in their approach became apparent quite quickly.

    There was in my opinion, a willful blindness that ME can occur in epidemics, that Ramsay et al ever existed, that doctors in other countries are using drug based therapies and even published papers.

    They didn't offer to me anything that I had no already tried (and failed) and their non-lifestyle advice I had seen elsewhere and for years.

    They do wrap ideas around that appears to be some current thinking into medical treatments around non-emotional issues but it is transparent when one looks closer.

    Holistically can mean anything and is a term abused by some therapists. I'm happy for any practitioner to look at me as a whole person but when that is just an excuse to push CBT or NLP or offer simple and non-applicable lifestyle advice under the guise of treating ME then it is just window dressing and worthless and shallow.

    You are very limited to getting ME help with actual treatments as the MRC has driven most doctors either into going abroad, stopping their work or being very quiet about it. Most of the London doctors who treated me are now gone.

    Maybe you could post a little more about what you have tried, what your symptoms are and people could chip in with suggestions.
     
    Last edited: Oct 15, 2014
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  4. justy

    justy Senior Member

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    Hi, have you tried searching the Optimum health clinic on here? there a quite a few threads about it already I believe.

    Sorry I don't have any ideas for Drs in London, I believe their is an environmental medicine Dr who practices privately in London along the same lines as Dr Myhill - sorry cant remember his name... Charles something.

    Some patients travel to Belgium for testing and treatment with Dr Kenny De Meirleir, others try the Breakspear in London which does a lot of testing for autonomic dysfunction, Lyme disease, allergies etc and offers treatments.

    Good luck!
     
  5. chipmunk1

    chipmunk1 Senior Member

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    I think what applies here:

    Psychotic explanations for illness exist to give the reassuring illusion that the problem is understood.


    Holistic means that they believe behavioural and psychological factors are important in ME not just biological factors which means you would probably get psychotherapy to treat your CFS symptoms which could mean they teach you how to think, emote and behave.
     
    Last edited: Oct 15, 2014
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  6. Esther12

    Esther12 Senior Member

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    Lots of reports of people spending lots of money and not getting back much in return. I reckon it would be better to donate to one of the ME research charities around.
     
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  7. JalapenoLuv

    JalapenoLuv

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    You would get a good idea of what their clinic is about by reading the Secrets to Recovery book. It looks like they focus on coping skills (psychology) and nutrition. Don't expect any miracles. If it's expensive and you don't need help in these areas you should avoid them.

    http://www.freedomfromme.co.uk/secrets-to-recovery/
     
  8. hanhanhannah11

    hanhanhannah11

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    Hi everyone,

    Thank you for all the replies, I was really not expecting so many responses so quickly and I am grateful! I'm going to reply to you all as soon as possible but please forgive me if I take a while because I am feeling quite unwell today. I'll try my best to do it now but I might have to finish tomorrow. Hope that is ok.

    Hannah x
     
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  9. hanhanhannah11

    hanhanhannah11

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    Is this based on your own experience w them? If so, can you elaborate?

    Hannah x
     
  10. A.B.

    A.B. Senior Member

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    This is my impression from looking at their website.
     
  11. JalapenoLuv

    JalapenoLuv

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    They claim half of their staff has recovered from CFS in that book. Interesting claim. The other book is heavy on EPA and GLA oils.
     
  12. Valentijn

    Valentijn The Diabolic Logic

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    Some us looked into their published research and their website, etc, quite closely when one of their researchers was supposed to talk about her research with some group in the US involved in making some policy decisions or definitions. Some data from that is scattered throughout this thread: http://forums.phoenixrising.me/index.php?threads/the-third-second-open-iom-meeting-may-5th.29346/

    But basically it's a quack fest. They talk a bit about nutrition, supplements, etc, but everything they offer seems to be focused entirely on the psychological aspects. The head researcher (Megan Arroll) from OHC was a hardcore BPS supporter, though she was happy to incorporate "alternative" therapies to attract customers and those who are wary of purely psychological treatments. And her views did seem to be 100% in line with those of the clinic.

    A nice chart from her thesis is at http://forums.phoenixrising.me/inde...-iom-meeting-may-5th.29346/page-6#post-452281 .
     
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  13. Sidereal

    Sidereal Senior Member

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    Arroll's PhD thesis which can be accessed freely online tells you everything you need to know about their views of ME/CFS and what kind of "treatment" you are likely to get for your money.
     
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  14. IreneF

    IreneF Senior Member

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    Can you provide a link to her thesis?
     
  15. IreneF

    IreneF Senior Member

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    I poked around the site. I would never go there, even if I lived close by. Feels like a place for the worried well or the hypochondriac.

    The main problem I have with the flowchart (as with the entire BPS model) is that it makes a lot of assumptions about us: that we somaticize, catastrophize, misinterpret bodily sensations, and so on. In truth, many of us were middle-aged when we got sick, and have no history of any of these traits. Under the DSM-IV definition of somatization, a person had to have a history of symptoms that started before the age of 30, and the symptoms had to be from several bodily systems.

    Every so often I will see a post from someone who clearly ain't got what I got, who is overly anxious, worries about every cough and rash, and has the sort of vague symptoms that fit into the somatoform disorder hypothesis. I don't know what to say to them.
     
  16. Sidereal

    Sidereal Senior Member

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    Nope. The link that I posted on the thread Valentijn linked to no longer works. You now need a University of Surrey log in to access it.
     
  17. Valentijn

    Valentijn The Diabolic Logic

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    According to http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.506003 the reason for access being restricted is due to the author requesting it. Megan Arroll probably noticed it getting looked into here and doesn't want patients to have such a clear idea of what her views really are regarding ME/CFS.

    I have a copy of it, but at 24 MB it's way too big to post here. If anyone wants a copy, send me a PM (private message/conversation) with an email address you want it sent to.
     
    Last edited: Oct 16, 2014
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  18. Sidereal

    Sidereal Senior Member

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    Great find, Valentijn.
     
  19. chipmunk1

    chipmunk1 Senior Member

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    that's so psychobabble: We must not to tell the patients the truth for their own good. A hundred year old tradtion. Just the outdated BPS hiding in plain sight.
     
    Last edited: Oct 16, 2014
    Valentijn likes this.
  20. RobertNI

    RobertNI

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    Yes i attended them this year, i found the physiology bit good, and has helped me with sleeping, anxiety, and stress. The nutrition has been reasonably, but i do not count it value for money at all, and they get you to buy a lot of supplements that i find hard to take. The cost is the big factor with them, i feel a lot of my symptoms are better than when i started but i have no more energy
     

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