Feel better soon, @Gingergrrl
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Including emphasising the funding differentials based on the degree of disability, and (separately) the overall cost of ME/CFS to the economy and society. A stark graphic or two would help get the message across.I do agree that asking to be treated on parity with other diseases and disabilities is another good way to tie it all together.
I don't think there is much between our positions. More a question of different timing priorities.I think any focus on a one off education campaign will not be good enough, just to elaborate on a point that has recently been discussed. Sure we need that, but we need to be sure that medical curricula include accurate information, that ongoing medical education courses cover ME adequately, that textbooks reflect the science and not obsolete speculation.
Also means doctors have no excuse any more. They can't say they were not told.It would be as much a priming exercise, laying the ground for more stuff later (particularly as research cranks up), complimented by changes to textbooks, etc.
We need a medical specialty to be assigned (like Invest in ME said it so well, that will not be psychiatry)
I have already commented that we wont get a specialty until one wants us, and that wont happen until we have maybe a blood test, or treatment, or something similar. I think the example I gave was Rituximab. If that proves very successful then the specialty would be Immunology or Rheumatology.I think we can't foist it on a specialty or else we'll be left with a specialty where we aren't wanted, and there is little worse than being unwanted.
Similarly for "pro"-IOM. I think a full support or a full denial of the IOM findings are not in our best interest. There are huge concerns, and huge opportunities, and most of that could be tested. Which is why I keep coming back to urgent studies. Lets not guess, lets find out.I think we hobble our own efforts if legitimate concerns are not allowed to be spoken/included out of a fear that it might perceive it as "anti-IOM."
This is the kind of supporting material we need, for sure.Including emphasising the funding differentials based on the degree of disability, and (separately) the overall cost of ME/CFS to the economy and society. A stark graphic or two would help get the message across.
COEs were funded by the National Institute of Allergy and Infectious Diseases (NIAID) but were closed in the early 2000s about the time this disease was moved out of NIAID to the Office Research Womens Health (ORWH) in NIH where it remains today. Reason given was that institutes didn't want to provide the funding.
Quite right. It did not. (And I think as a literature review it would not really be meant to.) The new part is the institution that produced the report. We live in a world where, as a shortcut to actually checking facts, people use appeal to authority. This is a logical fallacy. But it's the fact of the world we live in. People in general (be they doctors, journalists, or anyone else) do not know any Nancy Klimas from NOVA Southeastern, or particularly care what she says. Ditto for Derek Enlander and most of the other docs we might like to quote.The IOM report did not reveal anything new.
That's a good idea, although it seems difficult to plan and carry out. There's supposed to be one under planning now.The only thing that will make a difference in my opinion is mass demonstrations.
Just to be clear:
I don't like the idea of a whole specialty of medicine devoted just to this disease, in part because (as I understand it) that is not how it is done with other diseases. But I do support having doctors within some existing specialities (e.g. immunology) concentrating solely or primarily on this disease, and calling themselves an ME/CFS/SEID etc specialist.
Sorry for bringing up an old topic. I am still 6 pages behind...We had set this goal aside because there wasn't agreement on what we could ask for, right now.
I think the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) looks pretty good. They already handle Fibromyalgia in the Arthritis section, as well as autoimmunity and Lyme, etc. And the Muscular section includes "muscular dystrophies, inflammatory myopathies, muscle ion channel diseases, and muscle disorders". A lot of pretty relevant stuff.Moving to a different branch of the NIH however is a very feasible thing to ask for, and way overdue.
I'd strongly prefer getting out of ORWH. It's an inaccurate and misleading category, and somewhat offensive for the one-third of patients who don't have a vagina. And based on the FOIA emails and general behavior, the people in that office who have been dealing with ME/SEID are a bunch of petty and nasty "mean girls" who need to grow up. They aren't fit to handle any serious disease.I think we can ask to be moved to a regular Institute with appropriate funding added there... and failing that (or simultaneously) for ORWH to be fully funded for all the diseases under its purview.