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

aimossy

Senior Member
Messages
1,106
Actually I think we're at the stage where things are starting to get simpler: audience and basic goals are being narrowed down and decided upon. Once we have something resembling a consensus for that, we can focus on the details of implementation.

My understanding is that this project would be in the form of a petition, with no more than a few closely related goals revolving around research and perhaps education, and with HHS and/or congress as the targets.

Sorry Valentijn, I didn't think it had been narrowed down to good agreement on the common needs/goals yet because people were still commenting on those after @oceiv last write up of them. I also thought there was still discussion around targets as well. But I agree that there seems to be some idea of what those needs/ goals are now and that could start to be firmed up with another write up of those. I didn't realise that it was a definite petition yet. Is this now clearer for you Oceiv? Maybe I was missing a beat.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Sorry Valentijn, I didn't think it had been narrowed down to good agreement on the common needs/goals yet because people were still commenting on those after @oceiv last write up of them. I also thought there was still discussion around targets as well. But I agree that there seems to be some idea of what those needs/ goals are now and that could start to be firmed up with another write up of those. I didn't realise that it was a definite petition yet. Is this now clearer for you Oceiv? Maybe I was missing a beat.

I think that decisions on that are coming up next - but today, we need to focus on voting for who the target(s) of the petition will be.
 

Kati

Patient in training
Messages
5,497
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 :wide-eyed: 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.

First I would like to appologize for disagreeing so much.:bang-head:
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) in my opinion would not lead us anywhere. ME belongs to a similarly named institute in Canada and we're not going anywhere with that. I believe they have given us a 5000$ undergraduate grant. That's pretty much it.

But then can us the patients really say where we should be housed? I do not think we have a veto on that.

If I did have a veto, it would be NIAID. Study the disease side by side with HIV. Compare cytokine patterns and NK cell function. Gut microbiome
 

Kati

Patient in training
Messages
5,497
So that seems to be two votes for targeting congress and 1 vote for congress/HHS

I think we want patients and non-patients to sign, as we won't have enough signatories, otherwise.

I need help to keep this vote on who we target and vote count going when I'm not here. Are there thread participants who can help today, this week and/or in the future? We need all the task managers we can get on this action. Today, we need all the task managers and thread participants we can get to get this target subject resolved. In the future, we still need all of the all the task managers and thread participants to help with this action moving forward. I know that my time-limits are a challenge. But as I have said all along, for this effort to move forward, it needs to be dependent on a group of committed people. Every person has their health limitations and I also have to give time to my situation. We all can share the load and contribute when we are able.

But even if you can't do the above, your participation in these votes and discussion is important. Please keep voting while I'm not here. Current task: vote on target of our action. Determine the target from the votes.

Goodnight.
Targeting congress is begging for a lobbyist.
My 2 cents.
 
Messages
15,786
First I would like to appologize for disagreeing so much.:bang-head:
Hey, we gotta stick with what we're good at :cool:
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) in my opinion would not lead us anywhere. ME belongs to a similarly named institute in Canada and we're not going anywhere with that. I believe they have given us a 5000$ undergraduate grant. That's pretty much it.
NIAMS seems to be a pretty big and reputable institute in the HHS. And it would be a huge improvement over being stuck in an "office" for girly problems which isn't even focused on biomedical research.
But then can us the patients really say where we should be housed? I do not think we have a veto on that.
We can demand it. They can say no. We can kick up a fuss and try to take the issue higher up the political food-chain.
If I did have a veto, it would be NIAID. Study the disease side by side with HIV. Compare cytokine patterns and NK cell function. Gut microbiome
The problem is that there's no indication at this point that it's particularly infectious, or that the immune system is the central problem, or even a major problem. And I'm not sure that NIAID would be a good place for us to end up while Fauci is in charge of it.
 

medfeb

Senior Member
Messages
491
Assuming the action is specifically targeted to research - funding, focus, strategy and NIH institute, etc, the following information might be useful in thinking about the target…

In response to the CFSAC March 2014 recommendation for funding "commensurate with the epidemiologic prevalence and economic burden that this disease imposes on American society," HHS responded that "Agencies have the responsibility for determining funding for all diseases and conditions, unless directed by Congress."
http://www.hhs.gov/advcomcfs/recomm...ns-responses-march-2014-final-jan-14-2015.pdf

I've been told a number of times by HHS staff that increasing funding is going to require congressional action. I've also been told by some congressional leaders, including one on the HELP committee (Senate authorizing committee) that they will not take disease specific action while other offices have been more receptive. To be successful over the long term, we will need to identify and cultivate those who are receptive

The other issue we face is that the congressional budget cycle for FY16 is already closed so there may only be so much that congress can do this year but I'd think they could still put pressure on HHS to respond

Given that, I think it makes sense to target a research focused action to both NIH and to Congress.

personally, I think a goal to improve medical care gets more complicated - at least for the U.S. at this time - as it gets into the SEID criteria, the need to validate, the need to package with treatment recommendations which IOM didn't provide (to keep doctors from assuming SEID is a rename of CFS and recommending CBT and GET), etc. I'd think it would be useful to split that out and work through it separately.
 

Sean

Senior Member
Messages
7,378
The other issue we face is that the congressional budget cycle for FY16 is already closed so there may only be so much that congress can do this year but I'd think they could still put pressure on HHS to respond
True enough.

But also true that governments and their departments typically have reserve contingency funds that could be tapped into for the initial round of funding, to kick things off now rather than wait for the next funding cycle. The sort of amount we are seeking (as starter money) is peanuts compared to the size of the reserve pool the US government will have.

Convincing them to open that purse for us is a different story. All things considered might not be worth spending much effort on it, compared to working on the next funding cycle. Those more familiar with the US government system will be better placed to judge that.
 

oceiv

Senior Member
Messages
259
Interesting info @medfeb. We had talked about changing the medical care goal to a more narrow and very specific goal because of all of the complications, at this time (with the definitions, with CBT and GET). I don't know if that issue was resolved or not. But this was the more specific language suggested by @Kati :


Access to care: no patient should be refused health care (related to the illness or not) because they have this disease.

It seems the above would be a basic goal on which many patients would agree. We could then set aside the broader medical care goal on which there are are several issues, including the ones raised by @medfeb .

Would the above language be a good compromise?

Kati also added some important arguments against this type of discrimination, which wouldn't be included in our letter, but is good supporting info:

The wording needs to be very precise. We are talking discrimination here. Physician groups will not be happy with this because they want a way out, they want the ability to refuse these patients because they don't know enough about the illness. I know, I've been there.

We had also talked about how the congress could effectively stop this discrimination by amending the ADA to include our disease. They have done so for many other illnesses and disabilities.

https://en.wikipedia.org/wiki/Americans_with_Disabilities_Act_of_1990

http://www.ada.gov/

We had then talked about how the goals could be tied together with a theme of demanding that the U.S. government response to ME/CFS equal to similarly-disabling diseases. @Sean recommended that we also consider the severity of our disability, IIRC.

The President, House and Senate proposed their budgets for 2016, but they still have to negotiate to finalize the budget. Budget reconciliation usually includes many things slipped into the bill at the last moment. Negotiations will take time and usually result in a very last-minute deal. More info in this article.

The two chambers will gather after an upcoming two-week recess and hammer out a compromise, but a budget resolution is just a guide and has no power of law.

Here's an interesting article with beautiful (and sad) graphs on the U.S. science and research budget:

http://news.sciencemag.org/funding/...ay-be-ready-six-chart-primer-science-spending
 
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oceiv

Senior Member
Messages
259
First off thanks everyone who helped keep the thread focus on the target of our action.

It looks like people here want to target the U.S. congress and cc to U.S. health agencies.

We may need to move temporarily to specific topic threads for a bit. For the first specific thread, I was thinking that we could gather interest for our action by having a thread in which we discuss the reasons we should do a patient-driven advocacy action. @taniaaust1 mentioned good reasons for our patient-driven action. We could assess community interest level. We would not talk specifics of the goals yet, in that particular thread.

We were very close to agreement before on the goals, before. But we got hung up on disagreements about which version of goals would get the most support. We need to try a new and different strategy to resolve those views. Although it's an imperfect method, the best tool we have is doing a poll to see if our current combination of goals would get support and how much. This would be the 2nd next topic specific thread.
 
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oceiv

Senior Member
Messages
259
Finally, there was a family emergency this evening. It reinforced and clarified two things I've said here:

Should these two personal situations resolve, I personally, would then like to move forward with our action.

This project would then also need co-leaders for me to go forward with the project. The project cannot depend solely on one leader. We need a group of people, so that if one person's health, etc. decline for some days or more, other leaders can pick up the relevant tasks and focus on moving the action forward.​

I should know more by the end of the week and will then check in, either way. I will need several days to tend to this recent situation and rest after today's events. As is said, when it rains, it pours. Such is the nature of life. I may or may not be reading in the meantime.

Edit: My news does not mean the project should stop, it just means that to continue we need more leaders and we need to include different strategies to resolve issues.

Suggestions for a new specific topic are welcome. We should though, IMO not return to the previous approach to the goals debate, but rather wait to discuss in a new way in the community poll thread.

I think we've gone round in circles a bit on whether we should decide demands first and targets later and I see oceiv's request to vote on targets as a way to break us out of that circle.

Yes, exactly. :thumbsup:



In the meantime:
maybe the Alzheimer's legislation could serve as a model?
http://aspe.hhs.gov/daltcp/napa/NatlPlan2014.shtml

I found it in the Office of the Assistant Secretary for Planning and Evaluation, one of the HHS offices that writes legislation.

Great idea, we could now all discuss this suggestion in this thread, as well as this petiton site I checked out. It's open to international and U.S. people (all of us, I'd hope. No ETs here ;)). There's also an option to hide signatures from the public. I know I would use that option.

Check out the basics of this site:

http://www.thepetitionsite.com/petitionfaqs.html

Goodnight.
 
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WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
just storing this info here as it's likely people will see it here--I don't think it's an action we were going to take together, but if anyone plans to suggest an Institute and doesn't want to go with NINDS due to allergy to neurologists, or NIAID due to them kicking us out previously, or NIAMS due to them not being thrilled with having fibro under their remit...

TWiV mentioned as possible a couple of the above as well as the NHLBI, and another suggestion, actually my favorite because of working on diseases that affect "multiple organ systems" and familiarity with big picture work like bioinformatics and with cell biology stuff: NIGMS
 

oceiv

Senior Member
Messages
259
Hi. I'm checking in (a bit later than I thought). The situations remain unresolved and did have a bad effect on my illness. :( This is my current state. It's frustrating that our health can impact advocacy efforts in this way. We have so much to achieve with so little health reserves. In my frustration though, I came up with an idea for this advocacy action. I wonder if there might be interest in it.

Since it's a given that many of our health statuses will fluctuate, then any advocacy effort must take this fact into account. In this thread, we've narrowed down our goal list and each of us have our preferred list. What if we didn't have to choose as a group? Some details would need to be worked out, your suggestions would be needed in this respect. My new idea is that we have the basics of a letter to congress/health agencies here in this thread, already. If each person chose the combination they liked and emailed it to our already-chosen targets, the result would be individualized letters, all with similar themes. We could have a thread in which everyone can choose to post their letters. People could base their letters on those posted and wouldn't have to come up with a letter from scratch. But, you all would have to figure out how non-U.S. patients could be involved. With a petition, it would have been available to international patients.

As a completely shortened example with fictional names
(my notes are in italic):

To: Senators Alan Smith, Lisa Brown
Congress Members: Lila Cherub, Dan Deloria
HHS Director: Ellen Everlast
(Someone has to get the real names for health agencies. We can direct to senate and house minority and majority leaders, plus our local representatives)

I am a patient with ME/CFS, who has been sick for X years. I'm writing to demand that congress and our health agencies treat ME/CFS equally to other similarly-disabling illnesses. To that end, my demands are:

1) Sustained research funding of $Y, equal to MS and Lupus funding (funding amount for similar diseases would have to be researched by people here). The research must have ME/CFS expert-defined research subjects and include a diversity of patients. The research must include severe patients, who have been too often left out of research

2) Input from a broad-range and number of patients (specify more) must be included in our health agencies' next steps for our disease. Our health agencies' engagement model with ME/CFS patients must change to be more inclusive of patients and more inclusive of ME/CFS' heterogeneity.

3 ) Include or substitute your preferred common goals from this thread in your list.

4) Edit each goal as you like. Different wording can give this advocacy action a more personalized feel.

Sincerely,
Fred Howard
(You can add or not add IOM quotes, depending on your opinion. But please stick to non-controversial parts)

I've suggested this change in strategy because I don't want my setbacks to become our advocacy effort's setbacks and because any CFS/ME advocacy effort must rely on a group of people, rather than a single person. Example A: My March and April from hell. If we are to change things for us, then we must try new ways to work with our current health realities, rather than against them.

I haven't yet tended to PMs, if I owe you one. But thank you for those PMs. I do have to be here less than before (earlier in the thread) because of everything going on. But with a different advocacy strategy, the change could be a plus. Here's hoping the above or some modified suggestions will work to get us back to progress on our action.
 
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WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Sustained research funding of $Y, equal to MS and Lupus funding (funding amount for similar diseases would have to be researched by people here).
$100 million annually, as asked by Dr. Montoya, would be comparable to Lupus and MS.

Someone else calculated a figure that was quite a bit higher; I do not recall who, or where they were speaking. It was a "math-based" figure, that much I recall. And it was more like $250 million annually.

Any figure would likely have to be phased in over a few years as researcher interest and infrastructure is built. But it needs to come with a plan of how it will be phased in (for instance, Centers of Excellence including the centers which have been being developed without Federal intervention; biobanks; RFAs for biopathology, biomarkers, and studies leading to pharmacology; an RFA for incidence and prevalence; an RFA for natural course...)
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Hi. I'm checking in (a bit later than I thought). The situations remain unresolved and did have a bad effect on my illness. :(

Hi oceiv - welcome back! I'm sorry to hear that things haven't been going well and that you're not doing great. This is a horrible disease and it's great that you're trying to think of how people can work around this - I agree that this is too much for any individual to do.

oceiv said:
In my frustration though, I came up with an idea for this advocacy action. I[...] In this thread, we've narrowed down our goal list and each of us have our preferred list. What if we didn't have to choose as a group? Some details would need to be worked out, your suggestions would be needed in this respect. My new idea is that we have the basics of a letter to congress/health agencies here in this thread, already. If each person chose the combination they liked and emailed it to our already-chosen targets, the result would be individualized letters, all with similar themes. We could have a thread in which everyone can choose to post their letters. People could base their letters on those posted and wouldn't have to come up with a letter from scratch.

That's a clever idea! A menu of demands, and each person chooses as many from the menu as they agree with.

But if it's going to work as a mass campaign, it's important that it's perceived as such so I think the email subject line would need to be the same for everyone's email - 'ME/CFS patients demand treatment equal to patients with other diseases' or something better than that.

Also, we can't expect recipients to read loads of long emails, and if each contains several points, they're going to be long.

So I'd suggest a layout that makes the points easy to spot at a glance. So (from your example letter) something like:

I am a patient with ME/CFS, who has been sick for X years. I'm writing to demand that congress and our health agencies treat ME/CFS equally to other similarly-disabling illnesses. To that end, my demands are:

Sustained research funding of $Y per year
$Y per year would mean that ME/CFS patients would get as much research funding per head as MS and Lupus etc. etc. The research must have ME/CFS expert-defined research subjects and include a diversity of patients. The research must include severe patients, who have been too often left out of research.

Patients must be consulted in our health agencies' next steps for our disease
Our health agencies' engagement model with ME/CFS patients must change to be more inclusive of patients and more inclusive of ME/CFS' heterogeneity, etc. etc.​

oceiv said:
But, you all would have to figure out how non-U.S. patients could be involved. With a petition, it would have been available to international patients.

Our individual national institutions, histories and circumstances are mostly very different from the US and I haven't seen any demands that we could really copy closely. I suggest you forget about non-US co-campaigns and focus on this. After all, the energy for this comes off the back of the IOM report and that's going to have most impact in the US. I think it's best not to overload this campaign with too many ambitions, including international involvement.

oceiv said:
Edit each goal as you like. Different wording can give this advocacy action a more personalized feel.

I think that unless people are calling for the same goals and not variants (I want $50m a year! I want $100m! I want $250m!) it's going to confuse the recipients, make it look as though we don't know what we want, and weaken the campaign. I'd suggest identical headings. But varying the supporting text might help.

oceiv said:
You can add or not add IOM quotes, depending on your opinion. But please stick to non-controversial parts

A lot of PWME struggle to write, and I think it would be helpful to write two versions of an introductory para to the letter - one that made much of the IOM report (for those who want to use that ammo) and one that doesn't mention it (for those that don't).

I think it would be great to have a letter that people could build like Lego, from ready-made bricks.

Anyway, these are just my views.

But with a different advocacy strategy, the change could be a plus. Here's hoping the above or some modified suggestions will work to get us back to progress on our action.

I think this is a very smart strategy that gets us out of the hole of needing everyone to agree before we can move forward.

@oceiv, is the next step for individuals to volunteer to write individual demands (or lead small teams to develop those demands that are still a bit unformed)?

If so, I volunteer to write the para requesting more research funding, if no-one else wants to do that. I'm already fairly familiar with the issues and sources.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
$100 million annually, as asked by Dr. Montoya, would be comparable to Lupus and MS.

Someone else calculated a figure that was quite a bit higher; I do not recall who, or where they were speaking. It was a "math-based" figure, that much I recall. And it was more like $250 million annually.

Any figure would likely have to be phased in over a few years as researcher interest and infrastructure is built. But it needs to come with a plan of how it will be phased in (for instance, Centers of Excellence including the centers which have been being developed without Federal intervention; biobanks; RFAs for biopathology, biomarkers, and studies leading to pharmacology; an RFA for incidence and prevalence; an RFA for natural course...)

It was Carol Reid at the recent Solve presentation who mentioned $250m, I think.

Do we need to specify how they should use the money, or just ask for the money? I don't think it's for us to come up with an entire financial plan, is it? Or is it? Maybe those are famous last words of mine above when I said I was fairly familiar with the issues...