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Jen Brea giving TED talk on 27 June

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
The issue is that there are enormous upvotes in the replies section, so it keeps it at the top. But it's so arrogant: "we researched this in 1984. I haven't looked at it since then, but I figure research is in the same state now as it always was. I feel confident enough of this to post my thoughts in a public forum."

I commented but then realised separate comments aren't the answer. We probably need to pick a comment we like and all like that and comment on that (instead of writing separate comments). The reason that annoying comment comes up top is because it got the most response.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
I think Emma Shorter's comment might be better for this than Aaron's simply because the important bit of his only appears when you click to see more

"Research has revealed brain inflammation, systemic inflammation, low blood volume, immune system deficiency, abnormal gene reactions to exercise, abnormal energy metabolism in response to exercise, and abnormalities in the hypothalamic/adrenal/pituitary system."* In 2015 the Institute of Medicine stated M.E/CFS is a "complex, multisystem, and often devastating disorder" after reviewing thousands of papers from some of the top universities all around the world. Researchers at Colombia University have found potential bio-markers in the immune system. In 1978 there was enough evidence for the Royal Society of Medicine to state that M.E is a "distinct disease with a clear organic basis". Apparently a few people on here have found the cure! Perhaps they could share the evidence/details with the millions of people who suffer from it so they can get better
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;) ? *https://www.omf.ngo/

My comment is a bit in between both of these and was

I think a really key comment in Jen's talk is when she says that we are not just unlucky to still have no treatment. The investment in research has been nothing close to commensurate with the disease burden. Many rarer, less severe conditions have received more funding. Many of us have horrible experiences with doctors. People with ME are being let down by our institutions. It is simply not true that this is a vague illness and it doesn't tend to be relieved by anti depressants (SSRIs often make people with classic ME worse). Post Exertional Malaise is a key differentiating symptom and genetic expression after exercise has been shown to be quite different from controls and those with fibromyalgia. Some patients have gone into remission using Rituximab, a cancer drug also finding use in autoimmune conditions. In Norway they are researching this as a treatment. We don't know yet if this will be successful but what Norway does demonstrate is the difference when you remove institutional prejudice. They put out a call for research asking patients to input ideas, and read through all of them. Their Prime Minister blogs in support of people with ME. We don't expect to get instant answers but it would also really help to feel the public and public institutions are on our side rooting for us to get well.

I vote we each write short comments under Emma's comment.
 
The author of that uneducated comment seems to be a Physician's Assistant, given she works for the Veteran Affairs health care system, I wonder what her views are on Gulf War Syndrome. https://www.va.gov/providerinfo/phoenix/detail.asp?providerid=3458

Maybe we should upvote some other comment, too.
It would be ideal to upvote "good" comments that also have lots of comments on them, and upvote the good sub-comments as well. Also commentating, even something along the lines of "Good comment, thanks", will help nudge it upwards in Facebooks importance calculation.