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That’s an interesting perspective @arewenearlythereyet , thank you for sharing your side of the story. i know some men with ME who have been treated very bad by health care professonals, so I agree with you that men may not be treated better than women, especially when it comes to this illness...

I hate it when folks, researchers and physicians, do not understand cause and pathology of the disease and want to push exercise and rehabilitation at all costs. If you do not understand the disease, you study it. (Where they published their findings (journal of psychosomtic medicine) is a huge...

Scientists, publish your studies so we can hear from you first hand! Or better, please come and discuss your finding with us!

So sorry @andypants :(

@DokaGirl these are all neurological signs that points towards cerebellum issues. I womder why these doctors you have seen do not clue in to scan your brain to determine what the issues are. It makes me so mad when I hear stories like that and physicians don’t seem to either believe you or...

Ackkkkkk. Not buying a book on pacing. Will make a donation for research instead.

Talking causes much aggravation of my symptoms and can throw me in PEM, at least some kind of PEM. So talking is perceived as an effort. Moreover, talking just as thinking, requires your brain to increase oxygenation and therefore blood flow in the brain. For me, thinking and talking while...

I don’t think the health minister has any idea of how dire the situaton is (medical, socio-economic, emotional) for so many of us, and how patients are mistreated by our health care systems. And referring to the Montreal conference, the 3 major existing programs in Canada are all offering group...

I am sorry to burden you further @Alvin. It waas not my intention. I just want things to get moving. i want things to be happening in our country, and to each our provinces. I don’t envision one leader. I envision teams that works on one problem, teams that share what they know or what action...

Fair enough. However in our patient community, there will be some who actually want to and can do something. They may not know how, but wanting to is a start. We have a spectrum of physical/mental capacity and presumably we have folks with all kinds of knowledge from past professional...

But Alvin, I see you posting here often. It means that you have the cognitive capacity to think and write even much reduced. That is valuable. Some of us are bedridden but able to do ‘some’ cognitive work. Sometimes if we focused our efforts on one task, one topic, then we could move forward on...

Fixer upper, if you don’t like the results, you can change the data? Ooops... did I just say that? :jawdrop:

Sending my best wishes, @Hell..hath..no..fury... I hope you can lay down very soon and that your partner is well taken care of.

any updates from our Norwegian members about when the study will be published, and then the Cyclophosphamide one would be due too? Thanks. (I know, I assume that because you are norwegian, you should be able to know... :laugh: )

I would suggest we gather volunteers and form committees. So we could have -health ministry -human right committee -CMA (Canadian Medical Association) -women’s status./ equality -disability insurance and CPP -CIHR -patient engagement/ patient-oriented research -conference attendence and/or...

i have a few comments to make, in random order. 1. I may be repeating myself or others who made the comment, but let’s turn to history. Other diseases like ours faced enormous stigma and neglect from the medical community for various reasons which includes sexism, discrimination against gay...

@Jonathan Edwards :nerd: that would be your ball park (or cricket field)

Because validation is a very good thing, and having objective measure of disability matters a lot in disability insurance. i totally understand the risks... until we have biomarkers and until we are established within mainstream medicine, at least some of us will have to prove disability...

It is because Canadian blood banks (also affecting blood products) did not test for Hep C during that time range and people may have been exposed to Hep C may it be from birth, or other mean of getting it (blood transfusion, blood-blood exposure such as sharing needles).

This is a sad reality that most of us will experience at least once.