Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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For those of us in Ontario: I found this on the MEAO website

Discussion in 'Advocacy Projects' started by Snowdrop, Mar 16, 2015.

  1. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Ember

    Thanks for the acronym translation. I was unaware of this program in Vancouver.

    I would be interested to know about the response of specialists to the primer and more about how you introduce them to it(or to others for that matter).

    Having said that, if I were to consider doing the same I feel I ought to know what the primer says which would necessitate my reading it for myself. Which would still leave the issue of remembering.

    I don't suppose you know of a 'cliff notes' version?

    I believe in even small acts of advocacy by individuals. Especially as that advocacy is generally more direct (person to person).
     
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Yes it is. And I'd very much like to get past that.
    I was unaware of how funding works and what bodies are involved.
    I will try and educate myself in this regard.
     
  3. Ember

    Ember Senior Member

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    A printed version makes for easier reading. Try starting with the introductory pages ii and iv.
     
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  4. btdt

    btdt Senior Member

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    "

    1) Lumping ME/CFS in with a bunch of other illnesses that are sometimes co-morbid just adds to the impression that ME/CFS is not a distinct or diagnosable condition. Especially when the other illnesses are also not well understood it just makes one giant garbage bag for diagnosis, and contributes to doctors not taking any of them seriously.
    I can understand supporting other poorly understood conditions, but you don't see any other disease being lumped in with its co-morbidities in this way.

    Hi...
    I may have this wrong but it is my understanding that cfs..me fibro are all the same disorder which given enough time in some people will morph into mcs... and perhaps a movement disorder.

    I was dx in 1994 with cfs/fibro started with chemical sensitivities including a six month to a year stint of head drops and foot dragging in 2005 or so could have been 2006..

    shortly thereafter smells bothered me a lot and I was sick all the time.

    When I the head drops and foot dragging started I moved from my home to live with a relative seen a neurologist and was tested for ms... as that is what was suspected but it was not ms... I was told I had to change my antidepressant from effexor and celexa I had been on for years to cymbalta... this was done quickly.. it did not work I could not function... I tried to go back on effexor and could no longer tolerate it. I tried a few other drugs which I could not tolerate and was eventually left to deal with it on my own as it seemed whatever I was given just made me worse... basically cold turkeyed off 18 of antidepressants given for pain control...

    when I started reacting to chemicals about 10 years ago I thought it was the cold turkey withdrawal from ADs...which had varied horrid symptoms I will not go into here. I did tell clinic doctors and no clue was given to me that such a thing as mcs even existed.

    Over the years withdrawal lingered painfully as did the pain ect from ME... as did the chemical sensitivity... it actually got worse as I did not know I needed to avoid chemicals. I was having almost fainting episodes in the shower from shampoo and soap... would need to stay in bed the day I showered... showers became less and less... it spreads... if avoidance is not done .. ( and I didn't cause at the time doctors thought it was my heart and many other explanations were sought ... I had no doctor either because of the doctor shortage...)
    I kept getting worse till it was obvious to me I could not stand chemicals...

    I can't even recall how I learned of the WCH program after 18 months of waiting I learned they don't do anything anyway... by then I had had an anaphylactic reaction to a medication.

    I was told by Dr Kerr these are all related... one person can have them all... it is me.

    I now have a movement disorder that looks like parkinsons.. my doc thought Huntingtons when she first seen it... that started last summer.

    I was sent to a different neurologist not the one I have been seeing the last ten years since the foot dragging started.... one in a different city... he suggested a movement disorder clinic... that was last fall... it is a two year wait list for the movement clinic...
    So I expect to be to a clinic by the fall of 2019...

    I had the me/cfs/fibro before I was dx in 94.... how long I can't recall.. some days I now I can't think at all.

    I read on a site called seriously sensitive to pollution that a MP suggested a years ago a treatment center be set up.. it did not happen... sorry there was something there but I lost it... if I find it I will send a link...
    anyway the idea was that chemical companies lobbied to have whatever action it was stopped... her words or somebody elses words not mine...

    it is possible these are all connected or I guess it is possible they are not connected and I am just one unlucky sob... not sure... but if it is all connected... and it is common for it to proceed to worse outcome scenarios... then it is my reasoning that the group would be much larger and if they could all connect ... would be a much stronger force to push for change study and some kind of treatment....

    It has also crossed my mind that because I have so many things I have been to a lot of the support... information sites that service these disorders and at each I could learn a lot of different things that maybe if they were integrated... could end up being a more clear path of cause an effect...
    if we or somebody smarter than me could join all the dots
    maybe there is something to this... lumping us all together...

    maybe there is a common cause or causes... I am not sure but anything is possible.

    I was reading here the other day and there was a post from a person who listed the things I now have and said some day they will understand the connections and that they are all related... I did not have a pen and don't know how to use the tablet to save the spot... could never find it again on the computer... but I think there may be something to it...
    it was in Dr Ron Davis answers questions thread.

    ok that is my 2 cents..

    I am hoping for good things from this new center of excellence because they are the only game in town and I don't think I have much more time to wait. I sure hope they can get it together and sort something out... people need it.
     
  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    @btdt

    The way this disease behaves can be quite individual and so others will not necessarily follow the same progressive path that you have. If I'm understanding what you were saying at any rate.

    I had forgotten about the Centre for Excellence plans.
    Personally I hope that this is delayed until there is real concrete conclusive evidence diagnostically and treatment wise to ensure appropriate care.
     
  6. btdt

    btdt Senior Member

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    Is my face red....
    I had it mixed up with something else... I thought it was this task force they started this year...
    https://lindasepp.wordpress.com/2016/06/03/ontario-announces-the-task-force-on-environmental-health/

    not this
    https://lindasepp.wordpress.com/201...llence-in-environmental-health-has-a-website/

    I certainly hope everybody does not follow in my footsteps... that would be horrid... but some people may. I am just saying if there is a connection like I was told at the WCH that could be the reason they are all lumped together... could be many reasons too some not so good... I am well worn and jaded enough to expect it... still I have to have some hope.

    I get confused sometimes.. I am sorry for the mistake I often try to push past my limitations and end up in a mess...sorry.
     
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  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    @btdt
    No problem.

    On the subject of a CfE if I had my way (at least for one in Toronto) I'd want something that was about Complex Chronic NeuroImmune (or whatever they discover it to be) Diseases. They have this type of complex care (as in more than one medical specialty involved in patient care) at Bridgepoint health for example (I expect there are others).

    The only problem being -- at this time the care being delivered is over heavy with the psychological aspects of care and what to do for yourself (which can be useful I know). My husband has used allied medical services for diabetes.

    But at least the model exists.
     
  8. btdt

    btdt Senior Member

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    "CARE"
    Maybe I am an impossible dreamer but after years of this crap I want a cure to heck with the care stuff... it is time.
    I did a stint in a pain clinic and I know what you mean by this
    "over heavy with the psychological aspects of care and what to do for yourself" so very true there is only so much you can do ... after you know it all and done it all... it becomes harassment to keep pushing it. For me it has been a lifetime disease and I have tried it all - things suggested by our Ontario health care... tried all the pills exercise relaxation blah blah blah... all.
    Nobody said a think to me about not using cleaners in my house or perfume... either so it seems I am still learning as I learned about this today
    https://www.inspire.com/grayfancy/journal/fibromyalgia-is-caused-by-the-environment/?ga=freshen

    had I known this 30 years ago I may not be in such bad shape today.

    Still tho it has taken long some things won't be denied like the patients who can afford the ND treatments getting well ... some are getting well. Science will sooner or later have to acknowledge this.
    There is all the detoxing protocols coming into existence genetic study and every now and then the marshal protocol pops up in the news again.
    http://autoimmunityresearch.org/science/

    sometimes when it does I think of trying it.

    The real home issue here is we the people who have this deserve some answers and true treatment strategies to not just care for us...but to heal us.

    I know there is little incentive to heal chronic disorders there is no money in it... still I think it is what we need to shoot for.
     
  9. Kati

    Kati Patient in training

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    Personally I think we need real science and no so much self management. We may need personalized (precision) medicine since each one of us is slightly different, and there might be different pathologies at play.

    'Detoxing' will not get us far in the medical/scientific world. Naturopaths do not have the capacity to run science and most appropriate tests. I personally do not want to go on a wile goose chase and emptty my wallet on supplements that do not address the core issues. I am not going to spend thousands on tests that are not recognized by the mainstream medicne. Especially in Canada, having to pay for health care is a very, very bad sign.

    We need real science and high quality researchers who have sufficent curiosity and stubbornness to get to the bottom of our diseases. We need access to tests that matter, we need competent physicians who are not scared to speak up and who are not scared in prescribing drugs that are needed and which are supported by science.

    This is what i am advocatng for, not a vitamin cocktail.
     
  10. btdt

    btdt Senior Member

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    I am with you Kati IF that were possible.

    I am not sure it is in the time we are allotted to live. We could very well die of old age before this comes to pass. I think once we sense the grim reaper tapping his foot we stop caring about wallets and who believes in the testing. If I found something that worked I would buy it and I would take it. I have not found it.. and I have tried plenty of stuff that emptied my wallet soon it will be in perpetual emptiness ... but I hear some tapping and whatever life I have left I would prefer to live it better than I am now.
    Many things offer a chance ..just a chance it may be none of them work. I am trying to find what offers the best chance as I don't see much else offered.
     

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