What common goals can everyone work towards, regardless of their view of the IOM report?'

[oceiv]

Feel better soon, @Gingergrrl

 

[oceiv]

Rereading one my last comments, I see now that it could have been taken two ways. When I said that you all would keep discussing while I'm away from keyboard, I meant that you all doing so is a great thing. Because of everyone's illness, we need the whole group effort that has been ongoing to get an action done. I think we could be closer to writing our goals if that's what we want.

 

[Sean]

I do agree that asking to be treated on parity with other diseases and disabilities is another good way to tie it all together.

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 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.

I don't think there is much between our positions. More a question of different timing priorities.

Changes to textbooks and curricula in medical schools, etc, are necessary, but will take some time to flow through, a minimum of a year or two is my guess. A simple single round of catch-up education is something that can be organised and run fairly quickly (and probably cheaply) by the medical authorities / government. 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.

 

[Sean]

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.

Also means doctors have no excuse any more. They can't say they were not told.

 

[WillowJ]

We need a medical specialty to be assigned (like Invest in ME said it so well, that will not be psychiatry)

I haven't read all the posts so I apologize if this has been covered. I think it's reasonable and could be very helpful to be asked to be assigned to a particular NIH Institute (it would mean some group at NIH with an actual meaningful budget would need to take responsibility for our disease--they could then request a higher yearly budget to compensate for these extra patients), but I don't think we can ask for a medical specialty to be assigned.

There would be a number of potential good fits (infectious disease, neurology, rheumatology, immunology, hematology...) but 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.

(maybe this point means only to be put in a regular Institute like other diseases--I was able to read part of IiME's report and I seem to recall that being mentioned)

 

[alex3619]

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.

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.

The only alternative is if something like the IACFSME moves to create a new specialty. Government has little to say about that.

Moving to a different branch of the NIH however is a very feasible thing to ask for, and way overdue.

 

[alex3619]

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."

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.

 

[alex3619]

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.

This is the kind of supporting material we need, for sure.

 

[WillowJ]

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.

Why is ORWH not funded, anyway? Nobody cares about women? I realize lots of men get ME or SEID or whatever anyone wants to call this disease so it's really not an appropriate placement on that count... but... if that's who will take us... and they presumably have other diseases there that you really do have to have ovaries, etc., to get... why don't they have any money themselves?

Can't we do something about that and aren't there people who will gladly help fund the ORWH? (might be a stopgap measure to us)

 

[Sean]

Not sure it is a good idea to advocate for a dedicated specialty. (Though not strongly opposed to it either, if the medicos are happy to go that way then fine.)

Can't see any reason it couldn't be handled by sub-specialising within some of the existing specialities, which is usually what happens now for specific diseases.

 

[Kati]

It's just that because we do not belong in a medical specialty,
- specialists won't be paying attention because it's not their scope of practice
- there will be no or very little multi-centered clinical trials
- there will be no propagation of science in big conferences
- research cannot be applied to a large patient sample
- information does not reach out to family physicians on how to diagnose or how to treat.
- our expert base remains very low and our experts are much overworked, and of course underfunded
- medical students cannot learn about our illness because who will teach them?
- NIH is not going to pay attention.


Belonging to a medical specialty matters a lot. Which one, I don't know, but I would love to hear deliberations from our own experts (and we would have diverse answers I am sure)

 

[alex3619]

A lot of the debate and uncertainty we are having might be resolved if we can figure out more specifics of what we are planning.

The two targets so far seem to be NIH or Congress, though we could always send a copy to the other one, a kind of cc.

Some other issues can be resolved if we know what kind of action we want.

For example, if we want a broad public petition, publicized widely on the net and using (for example) public advocacy groups like Change.org etc., then we need ONE message, that can have elaborations. Every goal can be covered in the elaborations, but the core message seems to be one of two options that can tie it together - the need for research or the need for parity. An anecdote highlighting the seriousness of all this would help pull people in.

If we want a statement of an advocacy position, however, then itemizing many goals is fine. It also only needs to be widely advertized on social media we are already frequenting.

Until we know which of these positions, or other positions, we want to take I think we will keep dancing around as finalizing details is dependent on the target audience and the mode of action.

 

[Sean]

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.

 

[WillowJ]

The IOM report did not reveal anything new.

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.

They do care a little bit about Tony Komaroff, Jose Montoya, and Peter Rowe, because they are from Harvard, Stanford, and Johns Hopkins, respectively. But these are individuals, and until recently have been working alone in their institutions (Montoya now has people from his institution working with him, and Rowe is collaborating with well-known people in other fields at conferences on related but not strictly ME topics).

But by themselves, they still carry little weight because, hey, CDC, Mayo Clinic, UpToDate, and some random doctor (even a self-styled CFS expert, or even one who publishes like Christine Heim) from any large university or medical clinic would say something different (and inept, but the listener would not know it was inept and ill-informed).

IOM and the National Academy of Sciences is a big name. Bigger than Harvard, even, I think. In a world where names mean more than facts and analysis, the IOM/NAS stamp is bigtime. This is doubtless why Cindy Bateman described the announcement of the report as a "coming-out party".

The only thing that will make a difference in my opinion is mass demonstrations.

That's a good idea, although it seems difficult to plan and carry out. There's supposed to be one under planning now.


(Edit: I changed the last bit as my main purpose is just to say my position on this thread: there were definitely some things wrong in the way the report was subbed out with no communication or consultation with most stakeholders, but what they wrote I think is useable)


I think I understand the "fruit of a poisoned tree" reasoning, but the IOM basic result (this disease is serious, important, underfunded, has some recognizable pathology, and is not treatable with CBT/GET) is so completely different from any previous DHHS approach (except FDA) that I think it can be counted as a separate issue from the way things were done without stakeholder involvement (or even unidirectional communication).

(This might be different from P2P where the report's result is so muddied by the inappropriate focus on CBT/GET that it is much less useful, although it does contain some good statements.)

 

[WillowJ]

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.

I think one idea was to make a specialty for ME/SEID, GWI, fibromyalgia, MCS, and whatever else was related and didn't already have a home (or a home that wanted it--fibro for example is with rheumatology but rheumatology doesn't want it).

Another idea was to have doctors in some existing specialty learn particularly about this disease and some of them would list it as a clinical interest (after learning about it in detail)

Edit: but as has been discussed, this may not be something patients can do, or even HHS can do. It would likely have to be doctor-initiated, or organization-initiated, although support from other sources might possibly help.

 

[oceiv]

Interesting points regarding a medical specialty. When we discussed the medical specialty goal before, there were also pros and cons made. We had set this goal aside because there wasn't agreement on what we could ask for, right now. I had said that a specialty could be created, modeled on our current ME/CFS experts. I also think that @Sean 's idea of different specialists would work, if patients could access them all in one place. But we need to focus on where there's solid agreement, right now. I like @Kati's suggestion of reaching out to our experts on this issue. This issue is important, but if there's not agreement on it, then we have other goals on which there is agreement. Am I reading correctly that there isn't quite agreement on this issue, yet? But it's something that we could discuss after this action?

I agree with @alex3619 that we need to talk specifics. We had initially talked about targeting the U.S. congress and simultaneously other countries' equivalent political bodies. I discuss congress because I I'm familiar with it and follow U.S. politics closely. We need to decide whether to target just congress, also other countries' political institions or the NIH. Input and decision on this question is needed. I previously wrote about why targeting the NIH may again lead us nowhere. My vote is for either just congress or both congress and equivalent other political bodies in other countries.

We also need to decide on our final goals for this action.

@WillowJ Here's a link to an HR article on why we didn't get funding from OWH.

 

[WillowJ]

We had set this goal aside because there wasn't agreement on what we could ask for, right now.

Sorry for bringing up an old topic. I am still 6 pages behind...

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.

 

[oceiv]

It's not a problem @WillowJ People are joining at different times. Skip the contentious pages. Those are not worth your time. I've put the OWH link in that comment and will continue to update here in this comment with links to my explanation of why and when I think congress/other countries' political bodies should be the our target. I didn't want you silence any of you. Your thoughts and @Sean and @Kati's are still very much needed on deciding our final goals and target(s). I hope I am correct that we have disagreements on the medical specialty goal. If I am not, others can feel free to correct my impression. Sometimes, it's hard to tell with online communication
.

 

[Valentijn]

Moving to a different branch of the NIH however is a very feasible thing to ask for, and way overdue.

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.

There is a neurological institute (NINDS), but neurologists seem to have a tendency to hate us, and I'm rather scared of them in general MS is there, and dysautonomia, but I don't think I'd like having ME/SEID in an institute where they place so much emphasis on the central nervous system, and other areas of the disease might not been seen as important or particularly relevant.

 

[Valentijn]

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.

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.