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If this was one of the popular cancer or HIV or another highly funded disease conference, I wouldn't be so concerned about the lack of patient inclusion. But given the decades of harm and neglect of people living with ME by our hellth care system, I have little reason / evidence to trust their...

Day 3 A roundtable discussion that will focus on developing a collaborative ME/CFS research agenda that includes clinicians and researchers at the national and international levels. No research about ME, without ME patients. Its this kind of exclusion that sustains the health care horror for...

Done. Dear MP Carol Monaghan, Greetings from Canada. I understand from the global ME community that you are looking for health care experiences as a result of the (fraudulent) PACE trial. No doubt others have supplied links to the research and data that debunks the 'treatment' put forth by...

Patients are not their priority: The aim of the conference is to: Provide physicians, clinicians, researchers, and other healthcare professionals with a platform to discuss advances and innovations in the study of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. Develop, with the help of...

Patients are only allowed on Day 2: Choisissez votre type d'inscription / Choose your registration type: * Médecin / Doctor Chercheur ou Professionnel de la santé / Researcher or health professional Résident ou étudiant / Resident or student Patient (jour 2 seulement) / Patient (Day 2 only)

Yep, added it to my to-do list - will update here when I get it done.

They are either lying or incompetent. (Or both.)

Done.

Thanks @MErmaid That's an awesome resource. From https://radiopaedia.org/articles/empty-sella Treatment and prognosis As an isolated finding, they do not require treatment and have little clinical significance. It is interesting to note that when an empty sella is seen in the context of...

Does anyone else have this? https://en.wikipedia.org/wiki/Empty_sella_syndrome ...is where the pituitary gland shrinks or becomes flattened, filling the sella turcica with cerebrospinal fluid on imaging instead of the normal pituitary.ESS can be found in the diagnostic workup of pituitary...

Sad face.

Shared on Millions Missing Canada facebook.

FWIW, I've had numerous cognitive testing done over the last 15 years as part of HIV research (about 25% of pwHIV have mild cognitive impairment). 1.5 years ago, after I've had ME for 3.5 years, I was tested again (takes almost 3 hours) and scored very similarly to my previous tests (in spite...

Ditto, done.

I just got a "Webinar Full" message. Must be popular.

Done.

Millions Missing Canada will support the letter. I recently chatted with a person from Health Quality Ontario (Ontario is Canada's largest province) and she said they turned to NICE for treatment guidance for ME. I think l gasped. I briefly explained the history and current contoversy with...

Canadians always default to talking about the weather, so probably. :)

I have a friend who was seeing a psychotherapist for many months and when my friend's depression did not lift, the psychotherapist admitted that she was not helping. I was surprised by that admission, not something I've heard of frequently from that profession. But I was to be even more...