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I totally agree @Snowdrop The wider damage these constructs do is in diverting attention, time and dollars away from other potentially productive avenues for ME — while yet another rabbit hole is explored.

Thanks @Kalliope for posting. I was able to put out a Call to Action on Millions Missing Canada.

Sounds like a further update is being planned for the CDC website. Jose Monotya mentions that two weeks ago he was invited by the CDC and asked, along with a group of other physicians, to advise them on educational material that will go out to physicians across the US. (around the 22:50 mark)

Have you considered David Systrom's work @Dechi ? Transcript and video link to the interview with Llewellyn King.

Thanks for relaying your experience with it @Sing Yes, it was Dysautonomia International mentioned in the video and I've checked their site for physicians in Ontario, Canada. They have an interactive map and I found 4 doctors within a 125 km or so. I haven't checked them all out fully yet but...

Celery is extremely high in oxalate and many need to stay away from it, especially if you have gut issues. Oxalate sensitivity can cause pain. Googling the term may help you rule it in or out as a possibility. Best of luck with it!

Small Fibre Neuropathy in FM has been known for 5 years. Now SFPN in ME. Is it still all in the research phase or is any place, other than the people connected with MGH/Oaklander/Systrom, actually diagnosing and treating this yet? If not, given that the treatment is IVIG, how likely is this...

Hmmm... Here's a small study from 15 years ago in 2003 in which they found mestinon helpful with chronic fatigue syndrome. Efficacy of a half dose of oral pyridostigmine in the treatment of chronic fatigue syndrome: three case reports. Kawamura Y1, Kihara M, Nishimoto K, Taki M. Abstract...

In his latest video with ME/CFS Alert #98, Dr. David Systrom mentions that Dr. Oaklander will be working with the ME/CFS Collaborative Research Centre at Harvard set up through the Open Medicine Foundation. 28:57: DS: One can imagine that that's natural. One does what is in one's wheelhouse...

Is this being webcast or a live event only? Edit: Apparently the recordings will be made available on their website after editing.

Here's the ACE 'Adverse Childhood Experiences' Questionnaire. https://www.ncjfcj.org/sites/default/files/Finding Your ACE Score.pdf There's no place for this kind of thing in the ME world anymore. These attitudes have prevented us from developing and accessing treatments long enough. They...

Not in the presentation. I've heard it was afterwards to someone and it might have caught on camera, but like I said, we're still trying to track it down.

I heard @Alvin that someone may have caught that statement on camera afterwards. Just trying to track it down.

So far, we have a couple of people tweeting it to Canadian media and it's being shared on Facebook. We'd love further suggestions though. All are welcome @Alvin and @Barry.

Now Is the Time for PM Trudeau to Wake up to This National Disgrace! We Need the Voice of All to Help Amplify This Message We need this video to be seen and shared widely by those with ME & those without. Tag Canadian media and reporters on social media. Post to their pages. Send a link via...

They may be in the minority at the conference but they make up a majority influence (and growing quickly) in the mainstream government run treatment facilities that claim to treat ME. Here's one that had my blood boiling. In the presentation on the webcast, she never once referred to the...

The recommendations may seem simplistic and obvious but it's still more than what we've got. It was only 1 1/2 years ago that a federal grant was rejected denying ME was a real disease.

Well we know that's not going to happen. This has been the culmination of years of work and a new task force would have to be set up for that. Since it's a done deal at this point, the primary question as I see it really is: Do we not get behind this report and let all of these years of work...

CSS, MUS, MUPS, etc. are all attempts to bury ME in new ways. The dangerous part is that they're gaining ground. We have the ICCS in Nova Scotia pushing the CSS agenda now as well and physicians in Newfoundland consulting with CSS proponents. We have government sites using MUS, MUPS and I...

@Robert 1973 Fantastic! What a great job Robert. May we share on social media?