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I was just looking over my 23 and Me genetic stuff and noted that I am homozygous for AMPD1 gene, and it can cause Muscle AMP deaminase deficiency - and that is characterized by 'post-exercise symptoms'. I was surprised that I'd not heard of it yet: Epidemiology About 1-2% of the Caucasian...

I concur. But they do think they have the experience / imagination to know what it is like to live with chronic pain: It is a psychological manifestation. (And they've got the treatment.)

lol

All the elements previously mentioned are factors in why ME funding sucks, for sure. What I learned working with our group is that relationship building with key people who can make the desired changes happen is absolutely necessary. Both within the community and with the government. We can...

"Clueless" ??

I just interviewed a woman who was 'treated' with ECT (but not for ME) and she said that ECT neurological side effects can manifest between 2 and 10 years after treatment (iirc).

Dr. Alexandra Mandarano did a great job presenting - clear concise - even I half-understood what was going on - I'm particularly interested in relationship between ME and CD4s and CD8s as they are key measures in pwHIV. Interesting to see the connection between ME and allergies as co-morbidity...

Sounds like you've been following its development - did they publish the phase 3 results?

A tangential thought in a twisted twitter world of provocative sound bytes and faux social media news... An agent provocateur for the BPS brigade would use this quote out of context - Professor Jonathan Edwards says 'we have no reliable evidence for exercise causing long term harm' - to bolster...

Done. Super easy, 1 click.

According to the longitudinal Dunedin study... "Women are as likely as men to commit intimate partner violence." https://www.sciencemag.org/news/2018/02/two-psychologists-followed-1000-new-zealanders-decades-here-s-what-they-found-about-how

Part 2 of my interview with Erik Johnson, survivor of the infamous Incline Village outbreak from which 'chronic fatigue syndrome' emerged... https://medicalerrorinterviews.podbean.com

Fwiw, dude at my dog park has MS and he was involved in a study looking at the effect of exercise - he did not experience PEM when I questioned and explained it - but he did get fitter - his muscles responded well to the workouts.

Slight semantics aside: I find it curious the one respondent keeps referring to having 'won' disability payments. An odd term to use, I thought. People win the lottery, win a race. I suppose she won the decision granting her disability payments. I find it hard to fathom needing disability...

The beginning of the letter.... Re: Three Actions to Increase Awareness of Myalgic Encephalomyelitis Dear (Mr. Ms. Mrs.) (Last Name), I am writing as one of your constituents, to express my concerns as someone affected by the debilitating chronic illness Myalgic Encephalomyelitis (ME...

The more I learn of others' health care experiences, the more I'm convinced that physicians in training (and existing physicians) be required to (somehow) experience severe ME for a week. The value of that lived experience to patient care and treatment would be priceless. Sigh, if only I was a...

"... This study appears to be the contemporary example of a poorly designed, unethical research study that fails to protect pediatric subjects. This study will be used as an exemplar of poorly designed and implemented research. As researchers, we are to do no harm; the Lightning Process fails to...

"...the lack of remuneration “reinforces the view that their work is not as important as that undertaken by health professionals.” " I recently declined two patient rep opportunities for exactly this reason - and told them that if they were serious about patient partnering and not tokenizing...

If you have ME, you've probably heard of Erik Johnson - he holds a unique position in the history of 'chronic fatigue syndrome'. From his front row seat, Erik tells how egos, fear and profit-over-people has created the "greatest medical error in their history". Here is part 1 of my interview...

The video of the brain 'moving' in response to heart beats was pretty cool - I did know that was happening - it is at 23 mins of the first video. I also like how he says (28 mins, second video) that it may not be prudent to tell a new doctor you have ME because they won't investigate further...