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Dr. Roach took the exact sort of approach most doctors who don't know a lot about this disease should take. He's read up on some recent research and cautioned against over-exertion. What I sense from him is that he is keeping a curious and open mind about this disease.

What drives me bonkers is seeing ads for these sorts of therapies on Twitter and testimonials on YouTube...they always use the word "recovery." I don't doubt that there are people who are helped by such interventions...but why do they all have to say "recovered?" They would be more honest if...

@Sunshine3 - Just wanted to indulge in your frustration...as I feel the same way. Ian Lipkin said there is a publication coming out...we are waiting on at least two papers from the Norwegians. And OMF...I would love to see a paper (one is promised), from that team. Also, still waiting on...

Sharpe seems to insinuate legal action whenever someone questions his actions. The irony is, a legal case would expose him to total disclosure of his prior funders and research alliances...giving the "activists" the desired information.

Is AfME a non-profit under the law in England? In the US, salaries of employees is public information for non-profits...they are required to disclose.

I get the sleepy eye situation too, it's like I can't open my eyes all the way for full expression...but it's always both eyes. Sometimes my muscle weakness can pop up at times when I'm feeling okay. I can especially have problems typing, texting, or holding a cup of tea. It's more than...

@Dechi - I'm sorry you are going through this. I only have extreme muscle weakness intermittently, it can be bad when it sets in...especially in my arms. I don't know much about myasthenia gravis, but I have heard that there a multiple paths to the diagnosis...so that it's not always a clear...

Link to David Tuller's new crowd-sourcing for the coming year: https://crowdfund.berkeley.edu/project/9730/wall ETA: I see that David just created a dedicated thread for the link.

Dr. Maureen Hanson states in this talk that she will be doing a study that examines extracellular vesicles:

Mine sounds like an amplifier that is plugged in (sort of a hum/buzz)...it can get very loud. It tracks with my cognitive dysfunction.

I've donated to SMCI because of him...damn. I hope he sticks with ME/CFS...and I hope he knows how individually admired he is by patients.

It might be worthy to highlight the extreme vetting the NIH is doing for the intra-mural study. Dr. Nath reports have to screen 200 suspected ME/CFS patients, just to find 20 study participants. Also, the purpose of the formation of Common Data Elements is to ensure that trial outcomes can be...

The webcast is now available for replay: http://healthlibrary.stanford.edu/montoya2018.html

I posted a link above...also...it's the "right" on both sides. I transcribed it incorrectly the first time but have edited.

I don't know if there is a dedicated thread on this talk from January where Montoya discusses some of the current research: http://healthlibrary.stanford.edu/montoya2018.html

The right arcuate fasciculus and the right inferior longitudinal fasciculus. ETA: I got left and right mixed up.

I agree. It was frustrating to have time taken up with a homeopathy and EMF question. Montoya is doing follow up research based on Japanese studies. The just published studies, but I haven't seen them translated from Japanese. In another talk, Montoya said that they have an improved tracer...

At the panel discussion after a screening of Unrest tonight at Berkeley, Dr. Davis mentioned that the $5million donation to OMF by the Pineapple Fund was in part driven by patients who went online and made the case. The video recording should be up in a few days for a direct quote, it is made...

Interesting that Dr. Montoya said when he started at Stanford, medical staff received a letter telling them not to see ME/CFS patients. This sort of marginalization is what psychologists should be studying when it comes to this disease, not hypothetical false illness beliefs...but the actual...

"[PACE] will go down as one of the biggest medical scandals of the 21st Century." - Carol Monaghan