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Excellent points @Milo Even better question.

Not to de-rail the thread, but while we're piling on the betrayal of Health Canada...from what I understand, FM researcher Mary-Ann Fitzcharles did not adhere to the JLA protocol, especially the part about engaging patients, and throws FM patients under the adjudication bus: "While FM is...

Thanks @Snowdrop I've tried to connect Moreau - twice - to a metabolism researcher at McMaster U that I had a chat with. He was quite interested in exploring but Moreau never followed up. You can lead a horse to water.... We will be posting a draft email response to Minister Petitpas Taylor...

@rvallee We are preparing a response to the Health Minister. May I use your quote, anonymously, with the preamble "As one Canadian with ME commented, Health Canada is " "

Here was the reply from one of the MPs I copied when I also emailed the Federal Health Minister in early August: Dear Scott, Thank you for taking the time to write to me about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The Government of Canada, through the Canadian...

She's a failure. She could have acknowledged the zero research funding and committed to any amount - she could have acknowledged the institutional bias and harm and pledged to stop it - she could have acknowledged that Canada has the highest ME rates and announced a plan to address the crisis...

I think we all pretty much agree that the global ME situation needs a paradigm shift by the institutions (political, medical, insurance, etc) that are the power-holders of our health. We're probably all on the same page that those institutions won't change on their own without a significant...

I don't believe him/her. The documentary they produced is proof that a 'compassionate' framing was not the intent, validated by the patients' reactions.

I wanted to send them a quick email to say that I had taken a screenshot of this page as proof of their promotion of fraudulent research and iatrogenic harm but they don't supply an email address on their 'contact us' page: https://www.neuroscience.ox.ac.uk/about/contact-us Even that is stuck...

Just wanted to list the different ways the GET/CBT model harms people with ME, directly or indirectly: Psychological - as Dr Klimas said - paraphrased: They came to the doctor with ME. They left with PTSD. Physical - contraindicated treatments Social - perpetuating stigma Financial - not...

I concur, but, playing the long game, by attempting to engage them, even knowing most will refuse / ignore, frames us as reasonable and solution-oriented to prevent further harm, allowing our shaming to be justified / legitimate and less likely viewed as bullying / overly militant, and more...

Perhaps instead of 'name and shame', the purpose of the site is to 'educate and inform' these physicians, so its not just a bitch and whine fest, but a constructive process to bring these physicians onto our side. Something like: patient inputs their experience with physician's name, email...

Just discovered this other article on The Nib: A History of Human Guinea Pigs https://thenib.com/a-history-of-human-guinea-pigs

Thanks for posting that very digestible article - my brain really liked the format of graphics and text.

Is the objective of the website to be a resource for ME patients, or as an advocacy tool to raise awareness about institutionalized harm?

I watched this very interesting documentary on the herbal Kratom - some parallels with cannabis and govt inducing 'reefer madness' hysteria - apparently has been folks with opioid addiction and veterans with PTSD - and now forces are trying to make it illegal - follow the money. Wondering if...

I hope there is a big push back for not including patients. I'd go as far as saying that without patient reps on the committee, any guidelines they develop are automatically illegitimate.

On a triathlon forum a few years ago, some idiot was saying being gay was a choice. I asked him to share with all what he was thinking the moment he decided to be straight. The implication being that if he chose to be straight, that he was having gay fantasies / behaviour that he had to 'not...

A real eye-opener about the nutrition industry on this STEM Talk podcast interview with investigative journalist Nina Tiecholz - highly recommended: https://www.ihmc.us/stemtalk/episode-52/ There are many parallels between the researchers and nutrition industry pushing the 'fat is bad, carbs...

Health Promotion becomes Harm Promotion.