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Dr. Stein is a medical specialist with 33+ years of personal and professional experience with these difficult-to-treat biomedical diseases. Her experience in working with more than 1,000 patients is that there is no simple recipe to recover from ME/CFS, FM, ES and Long COVID. The people who make the most progress care for their whole person: body, mind and emotions. The Pathways to Improvement program helps you identify the pieces of your individual health puzzle and directs you to the tools an strategies you can implement to heal.
 
Mij said:
Dr. Stein is a medical specialist with 33+ years of personal and professional experience with these difficult-to-treat biomedical diseases. Her experience in working with more than 1,000 patients is that there is no simple recipe to recover from ME/CFS, FM, ES and Long COVID. The people who make the most progress care for their whole person: body, mind and emotions. The Pathways to Improvement program helps you identify the pieces of your individual health puzzle and directs you to the tools an strategies you can implement to heal.
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Yeah, I’m not so into some of her recent stuff.
 
Why would an Immunologist send patients to a long-COVID clinic when they don't understand the illness? They send them there by default.

By the fall of 2020, Brant knew he probably had long COVID and was relying heavily on advice posted online. “I wasn’t getting any medical help, so I’m thankful for that group.”

Last year, Brant signed up with a family doctor through an Indigenous health centre and finally received a referral to an immunologist, who in turn sent him to a long-COVID clinic. There, he sees a physiotherapist for light exercise designed to build his strength back while avoiding a relapse of his symptoms. He also meets with a psychologist, a dietitian and an occupational therapist. Some of his symptoms, including brain fog and tremors, are better, but not gone.

https://www.readersdigest.ca/health/conditions/long-covid/
 
Diagnosing long COVID: Canadian researchers discover unique new clue

What they found was that patients with presumed long COVID had proteins in their blood demonstrating rapid changes in their blood vessels in weeks and months after confirmed COVID-19 infections.

These same biomarkers were not present in patients who did not develop long COVID.

Not only can identifying these elevated proteins be used to diagnose patients with this condition, it also points to processes going on in the body that could help in the development of potential treatments, Fraser said.

https://globalnews.ca/news/9194036/long-covid-canada-researchers-diagnosis/

thread here:Elevated vascular transformation blood biomarkers in Long-COVID indicate angiogenesis as a key pathophysiological mechanism 2022, Patel et al
 
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The College of Physicians of Quebec (CMQ) has published some informations about ME on its Facebook page. Since I'm not a FB member, I don't have access to all comments. It's certainly not perfect: boldface "chronic fatigue" instead of chronic fatigue syndrome, don't mention PEM. :facepalm: There is a quote from Dr. Nina Muirhead ! But, at least, the term myalgic encephalomyelitis is associated with it and the AQEM * website is presented as a reference. There are several relevant critical comments. For those interested (Nov 10, French):
https://www.facebook.com/CMQofficiel

* Association Québécoise de l'Encéphalomyélite myalgique

Translated excerpts:

"In Canada, approximately 600,000 people are thought to suffer from chronic fatigue syndrome (Canadian Institutes of Health Research)."

“Often, people who suffer from this disease will say that they “no longer recognize themselves". They become unable to carry out daily activities, which were previously easily achievable, such as taking a shower or preparing a meal. In 80% of cases, the disease occurs as a result of a viral infection."
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The only issue I have with MAID is that persons with disabilities (including mental illness) and Veterans are being offered this option as a way to end their life b/c of the governments neglect to provide adequate care and financial supports.
 
Chronically ill B.C. woman ‘dying of poverty’
Moira Wyton, Local Journalism Initiative

https://infotel.ca/newsitem/chronically-ill-bc-woman-dying-of-poverty/it95222

Madeline has found some naturopathic treatments that help alleviate her symptoms so she can spend time with friends and in the outdoors, but they are not covered by B.C.’s Medical Services Plan. The supplements from her disability coverage offer just $23 for 10 sessions per year — a fraction of the $200 to $300 per-session fees she needs about three times a week.
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I’m sorry for people with the illness who are in financial difficulties. I’m afraid I don’t find this particular case the most deserving. The amount she is looking for seems excessive given the medical evidence for therapies for ME at the moment.
 
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I saw an M.E specialist in 1992 and he treated pain and insomnia. I'm wondering what treatments she felt would have helped her earlier in the illness to 'prevent' her from becoming worse? I agree that doctors need to be educated on pacing to prevent future harm.

I'm not sure if she's allowed to receive money from GoFundMe while receiving provincial disability benefits?
 
I want to believe. I really do. It's so frustrating to be unable to do anything, not being able to hold people accountable. Especially when they are doing basic mistakes.
#LongCovid is a serious health condition that can have enduring consequences. Our Task Force reviewed scientific evidence and heard from people with lived experience. Today, I delivered our recommendations
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Richard, I am one of the scientists responsible for implementing this plan. The past will not be erased, this is the dawn of a new day, the recognition of all post-infectious diseases. We have ressources to move forward now. It took long enough, but this is a 5-year commitment.
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There is very little in the recommendations that acknowledge this. But I know the advocates did their best and that people like Simon are there. This is really about overturning decades of failure. It was never going to be easy.

I just never imagined in early 2020 that nothing wouldn't have changed by the 2.5 year mark. And I had very low expectations.
 
rvallee said:
I want to believe. I really do. It's so frustrating to be unable to do anything, not being able to hold people accountable. Especially when they are doing basic mistakes.






There is very little in the recommendations that acknowledge this. But I know the advocates did their best and that people like Simon are there. This is really about overturning decades of failure. It was never going to be easy.

I just never imagined in early 2020 that nothing wouldn't have changed by the 2.5 year mark. And I had very low expectations.
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The same report or sub report mentioned fatigue as a mental health issue. That was disturbing. Fatigue when it comes to anything deemed biological (MS, cancer, Hep C is not mental health related. But fatigue when it comes to ME and LC, well that is mental health related. And that is wrong.
 
Milo said:
The same report or sub report mentioned fatigue as a mental health issue. That was disturbing. Fatigue when it comes to anything deemed biological (MS, cancer, Hep C is not mental health related. But fatigue when it comes to ME and LC, well that is mental health related. And that is wrong.
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Yeah, it's really become indisputable that medicine is simply unable to do this on their own. I've been saying that for a while but it's impossible to ignore. They simply can't stop defaulting to the same thinking that failed, because they can't even acknowledge any failure. It's just so easy to give up when everyone is encouraged to.

I can't stop seeing this a stubborn man unable to ask directions and ends up lost in the wilderness or driving off a cliff. Except it's a remote driver and it's us who end up there while they marvel at being such good drivers. So weird. It's clear that most of those issues are cultural, have to do with the image medicine builds about themselves and how it affects their ability to assess what they do.
 
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