blerg. I am equally annoyed that they are doubling down on the "environmental" angle, for the following reasons:
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.
2) By their own statistics (the Venn diagram), there is a significant co-morbidity, but MOST of the patients in each group only have one of the three. How is this serving the majority of patients in any category if we only focus on those that fit in that small overlap?
3) The ONLY services for ME/CFS that currently exist in Ontario is the one Environmental Health clinic. We absolutely need more services, but I would hope they would expand to include more approaches, rather than just duplicating the one and only option already available. One which may not be helpful to those that don't fit into this subgroup.
4) While environmental health aspects of ME/CFS may be a potentially fruitful avenue to explore, this is NOT the direction any of the current research has taken. Most of the recent promising results are in areas relating to the immune system. Why are we going off in a completely different direction? one that is as yet unproven
5) If people want "alternative" medicine treatments those are already readily available (though at a cost). Why is this document pushing the integration of that approach? There is no validated efficacy for this approach at this point, which is just going to once again contribute to us not being taken seriously. This document refers back to evidence in a number of places, but then randomly throws in casual references to the harms of WIFI, again, not a mainstream position, and probably not helping us out. not to mention if this alternative/integrative approach is actually approved it would be taking up what little resources are available for an approach that is already available.
sorry. rant over. I got excited that something might actually be getting pushed forward in Ontario and then pretty upset with the direction and content.
"
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.
