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

oceiv

Senior Member
Messages
259
@Ecoclimber I hear your frustration and know the stakes/emotions are really high in this discussion. I'm new to guiding threads and newish to this forum. So, I'm unsure how to say this: I appreciate all of your input on this thread. At the same time, your last comment came off maybe a bit harsher than you intended?

Some of us don't understand all of the history or (like me) only understand some history. @jimells was also asking about where he could get info on the history. The history and the status quo are difficult to follow even if you're not laid out in bed or having endless tests or in constant pain. I have tried at certain times, to follow the history. It does not come up easily in one search. If others have links, they can put them here.

Some thread purpose info for everyone: In this thread, people can voice concerns if they are.also discussing common goals. This thread is also for respectful discussion. It's good to stay focused on our common goals and ask others for their input if they veer off-topic. There has been such great discussion, ideas and suggestions already. Let's keep it moving forward.

Simplistic, totally silly examples to better explain what I mean:

Ex. 1: I feel X about the IOM and I'd like to suggest a common goal = on-topic

Ex. 2: I feel Y about the current state of advocacy. I don't know how to fix it. Can others suggest a common goal to do so? = on-topic

Ex 3: I hate X and Y and I don't agree with any common goals = off-topic

Ex 4: I'm frustrated by Y and Z = needs clarification as to whether this is example 2 or 3
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The alternative I suggested is that we would be asking relevant agencies to fund research, which has cohorts defined by ME/CFS experts. Can my suggestion or any other solution resolve this difference of opinion so that we can move forward?
I have suggested, and I don't recall if its on this thread, that we could have more focus on specific research projects. Largely that means focusing on patient funding, not government funding. Its not a deal break if someone only wants to fund CCC projects. I am suggesting that there is no current mechanism to do this. Its impractical. Even if Congress wanted this they might fail.

Maybe someone who knows a lot more about US government research funding arrangements can comment on this. If there is a mechanism for Congress to get really specific about funding then it might work, but only if we had Congress pushing it. That is a tall ask.

Is there a way to get HHS to do this? How do we get them on board? How does anyone rate the chances of them cooperating?

One thing I think should be on our agenda is how to get pilot projects funded ... small studies to see if an idea has merit. Most of that will not be from government sources.
 

Nielk

Senior Member
Messages
6,970
The reason why I believe that our community is so fragmented is because the CDC constructed an umbrella fatiguing illness around the historical disease Myalgic Encephalomyelitis.

We now have CFS which is a vague fatiguing illness.

We have ME/CFS which is not here or there.

We have ME which is the infectious neuro immune disease.

Based in which entity one suffers from or which entity one wants to represent, that is where ones stand is in the community.
 

medfeb

Senior Member
Messages
491
Building COEs will take time. I don't know the issues involved as to why COEs were not built for us, other than the general neglect towards our disease. What does everyone think of this goal? Are there other any existing campaigns for COEs?

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. SInce then, the CFSAC has requested funding for them on a number of occasions and has a current effort going on to put together another request. The draft P2P report also called for a network of collaborative, multi-disciplinary centers.

I think this is an important goal. Such centers could not only help research by driving the multi-disciplinary approach that Stanford has done well but also address the clinical need, start to replenish the researchers and clinicians who are nearing retirement.

The alternative I suggested is that we would be asking relevant agencies to fund research, which has cohorts defined by ME/CFS experts. Can my suggestion or any other solution resolve this difference of opinion so that we can move forward?

Given the publicity and especially any influx of funding, its possible and even desirable to get an influx of new researchers into the field. They won't know the nuances of accurately picking cases of this disease. So I think the goal has to be defined in a way that is not reliant on the current experts picking the cases (not all would come through the COEs) and also avoid the ambiguity in the term "ME/CFS" by specifying the criteria to be used or else specifying the use of disease specific criteria that have demonstrated reliability

It was made clear by both Nacul and Jason at the P2P workshop that Fukuda is not specific - Nacul said that of the 163 unique combinations of FUkuda, only 35 have PEM. Lenny made a similar point based on the wide variance in the percentage of patients with PEM across Fukuda studies and there are a number of published papers on this lack of specificity, even one from CDC. IOM acknowledges PEM is required, further undermining Fukuda. Experts are already using CCC. IACFS/ME has declined to endorse IOM's SEID for research. At the same time, the IACFS/ME comments suggest that researchers might want to include Fukuda for comparability.

Putting that all together would suggest a recommendation for research cohorts to be defined by CCC plus Fukuda (meets both)

It might be important to articulate why not use SEID in research - the case could be made that SEID is not tested and is based on subjective tools that have not been operationalized. Using that instead of CCC in research would set us back just because of the specificity issues, never mind the fact that we don't know how SEID cohorts compare to CCC cohorts, which would make it difficult to compare study results.

I understand that a call for research using diagnostically accurate criteria hasn't succeeded before. But the cards are stacked differently now and there's lots of supporting material in the IOM and P2P reports - even the AHRQ Evidence Review - on the problems caused for decades by overly broad and sloppy definitions and sloppy research. If we don't push for it now, when would we?
 
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aimossy

Senior Member
Messages
1,106
I am wondering, would people support a campaign that has one very strong message. I ask because a groundswell of people asking for the same thing to meet a severe need that is simple is always stronger when lobbying.

Example.

Asking for more funding and asking for congressional help. The argument based around equality with other illnesses based on functional loss and prevalence. Using IOM and P2P report statements that support that argument.

I'm not saying at all that the arguments around criteria and research are not also really important. Just want to know if the above message in this way would be supported by all?

There would be no mention in the campaign about criteria or SEID. But the term ME /CFS would need to be used as the term for the illness as that is most recognizable. If you are advertising the effort to new followers this needs to grab people diagnosed but unfamiliar with the politics or the internet community goings on.

I am wondering also how many people we really have active in the internet community. Would anyone have an educated guess?

Could we test this? We could start a small social media movement based on this one message and see if it grows. See if it would begin to also snowball, because if you have hit the right buttons it could just keep getting bigger and bigger with support.

I think the key is to have a simple powerful message and clear goals that start small and can be built on as more support for the one message is garnered. So the idea is to build a movement based on this one message and you have to start somewhere and see how far you can get over time.
 
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jimells

Senior Member
Messages
2,009
Location
northern Maine
I only know the basics about Centers of Excellence. Do you mean that if we ask for carefully-picked cohorts, the COEs would be responsible for picking cohorts carefully? Or do you mean that we should again ask for COEs along with the cohort request? Congress would have to approve the money. Budgets are being negotiated now.

We need money for research and people to do the work. Reopening the research centers would be a good start. It seems reasonable to me to think that a properly run Center of Excellence would be competent at picking cohorts.

The previous research centers (there were three, each with a different focus) were open for only four years, then the funding was revoked. The rationale was they were taking up too much of the research budget, so there wasn't enough left over to fund independent researchers. Apparently it never occurred to anyone to increase the budget for this illness at a time when the overall NIH budget actually doubled.

After the centers were denied funding, the money didn't get re-allocated to other research. Instead it was just sent back up the money chain, with the result that independent researchers still did not get an increase - the money spent on our illness simply declined. The current budget is actually less, in nominal dollars, than 15 years ago.
 

Ember

Senior Member
Messages
2,115
They are only offering group sessions and 1 visit with the dr and a follow up visit. The follow-up visit was useless because there were no interventions.
I beg to differ in that your statements about the Complex Chronic Diseases Clinic aren't true to my experience.
 

oceiv

Senior Member
Messages
259
@Nielk @alex3619 @medfeb @jimells Thanks for all the informative posts on COE and on community fragmentation. I think @joshualevy would be especially interested in @Nielk 's comment.

How can this history inform our success?



@alex3619 I support the goal of pilot projects. Especially, If it is concurrent with asking for government-funding. I read here recently that Nancy Klimas uses pilot projects to ask for government-funding. A crowd-funding campaign for her research is ending in one day. A good reference for something like what you're envisioning. @jspotila knows a lot about the funding process).

How does everyone feel about a pilot projects funding goal?




@aimossy Good question. Are you referring to a separate group or to using those methods to further the common goals discussed here? (As an aside, I tried to sign up for the ME Action Network, but the sign-up page wouldn't let me type in the box). I do know that we in this thread have all different opinions on the IOM report. I think we here first need to agree on specifics for our funding goal and if it is the most important goal (the one we would most want to use for a pilot test).



I understand that a call for research using diagnostically accurate criteria hasn't succeeded before. But the cards are stacked differently now and there's lots of supporting material in the IOM and P2P reports - even the AHRQ Evidence Review - on the problems caused for decades by overly broad and sloppy definitions and sloppy research. If we don't push for it now, when would we?

Well-put! I also agree that we need to clarify that SEID is not a good research definition and think we can do that by expanding the existing common goal of asking for the SEID criteria to be tested/validated.

I'd like (if I'm up to it later) to make a second revised goals list and do an informal vote to see if we're on the right track.

 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I am wondering also how many people we really have active in the internet community. Would anyone have an educated guess?
Maybe 3000, with an unknown number of patients watching but rarely doing anything, call it 10,000 more maybe. This is not an indictment, I have explained at length many times all the factors that make it hard for us to participate. MS patients tend to be more functional, HIV patients are more functional, we are at the bottom of the functional barrel as well as the funding barrel.

There are even more patients than that online, but most don't get into the politics or advocacy.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
So the idea is to build a movement based on this one message and you have to start somewhere and see how far you can get over time.
This general idea has been discussed before, but so far has not taken off. Its about which message? Centers of Excellence fits the research agenda, our need for funds, our need for researchers, etc. I think most of us could get behind it, but that could be just wishful thinking on my behalf.

We also need to consider the global message, not just the US message. How many countries are doing almost nothing? Way too many. Its a small number of countries getting involved, again and again. Yet we have the example of Norway, where little was happening, and now they are leading the world in a first ever phase three clinical trial of a drug with full remission potential. Even Ampligen did not offer us that.

To what extent is it worth non-US-citizens focusing on Congress? To what extend is it worth us focusing on our own local government, and urging every single country to fund at least one Center of Excellence?

"One Center of Excellence" sounds like good slogan. With, of course, the understanding that more are better.
 
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aimossy

Senior Member
Messages
1,106
@oceive I am just trying to gauge support for one message or one common goal that might be supported by all. If people couldn't support something like that I struggle to think how they would get behind other things more complicated being added to it.

I fear it would be a case of people thinking I dont really agree with that part of this campaign so I wont support it. That would mean to me that the campaign may be dead in the water. That might not be the case but I really struggle to think how anything can be built if many don't band together and try to do something together for the good of all. Clear needs and clear goals within the chaos needs to be found.

I'm not trying to derail the thread at all. I do hope that the #ME Action network gets up and running. The platform will be available for all and something popular that came out of that platform could take off.

I'm not saying that any efforts wouldn't be effective at all either. Alex I had wondered if there was about 20,000 maximum if you include lurkers watching but not engaging. I think this really highlights the need for diagnosis and for us as a whole to try and get more people engaging in the community especially if you think the numbers are even lower than what I thought they might be.
 
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oceiv

Senior Member
Messages
259
Quick response. @aimossy I don't think you were trying to derail. I was trying to figure out which of two possible relevant points you were making. Your voice is important in this discussion, as is everyone's. More later.
 

aimossy

Senior Member
Messages
1,106
Quick response. @aimossy I don't think you were trying to derail. I was trying to figure out which of two possible relevant points you were making. Your voice is important in this discussion, as is everyone's. More later.
I edited my post while you were responding.
 

oceiv

Senior Member
Messages
259
I'd like to do another informal vote to see if we're moving towards consensus/ agreement of our goals.

To vote:

1) If you agree with all goals or you agree with most/some, but the others would not be deal-breakers to joining an action to support these goals, like this post. Feel free to comment in addition to your like.
2) If you agree with some/most, but there is a deal-breaker goal, please post a comment about it. A deal-breaker means that you would absolutely not suport an action if this goal is included.
3) We recognize there are some who wish to express opinion by like, because they are too ill to post comments.

The vote will help determine how we can move forward

I've updated/revised the earlier list to reflect our conversation. Thank you all for your input.



We all seem to agree that:


  • We need more research funding from our governments, including urgent need for biomarkers which are easy of access*
  • We need to take advantage of the publicity surrounding the IOM report to push for increased research funding**
  • Severe patients need to be more included in research. We should push for this to happen.
  • We need better patient care, including for severe (housebound and bed-bound) patients
  • We need a medical specialty to be assigned (Invest in ME expressed this point well; the specialty will not be psychiatry or psychology)
  • Education programs are needed for med students and continuing education for all physicians, which does not include Fukuda or worse definition.
  • We need to fix the broken engagement model through which HHS interacts with this patient community. We need a fundamental change in the overall policy of governmental engagement with the patient community
  • Testing/validation of the SEID criteria is necessary.
  • The patient community needs input into what happens next
  • Centers of Excellence are needed in order to properly-treat this systemic disease. COEs are also needed to diagnose more patients and train doctors/medical students
  • There are disagreements about the IOM report and it has been divisive. **Therefore, we're not taking a position on the report
  • Many patients are scared that if their desired outcome about the report doesn't happen, it will have dire effect.
  • There are both good and bad parts of the report
  • We represent the views of one patient group. We do not speak for the whole community


Many of us agree that:



  • We can work together, despite differences
  • There are valid points and concerns on all all sides
  • When we disagree, our priorities and strategies will likely differ. But despite these differences, our advocates can also aspire to common goals
*There have been some solutions proposed to get consensus on the research cohorts. All are pending and do not yet count for the vote.

Let me know if I've missed goals. I hope you don't mind that I'm going to tag people involved in this discussion, so that we can get a broad vote.

@alex3619 @aimossy @Aurator @Ecoclimber @Ember @jimells @joshualevy @Kati @mango@medfeb @Nielk @Sasha @snowathlete @Snowdrop @user9876 @usedtobeperkytina @Valentijn
 
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oceiv

Senior Member
Messages
259
Methods by which we'd enact our action: What are some ideas? Thoughts on methods already proposed and propsed in this comment?

@aimossy The issues you are bringing up are very in line with what we're trying to determine. I've used an informal vote to try to determine agreement on goals. The discussion of goals by everyone is how we're also currently hashing out the goals. You've suggested a social media test for one of the goals. We've discussed other methods too like delivering a petition in person. There are many approaches we can take. I'm sure people will think of other suggestions.

Who here or in the patient community has expertise in budgets and advocacy? Are there people here willing to ask others through PM/email/social media?

@alex3619 Foreigners are allowed to lobby the U.S. government. I know that businesses and many countries do lobby the U.S. govt.. Usually, how it works is businesses and countries either send a representative or hire a lobbyist to talk to congress members. I don't know if advocacy groups do this, too. Others would know more about this process. I agree that we should target our home countries' governments simultaneously. The U.S. government currently has a petition site. It's targeted towards Americans, but we could do a concurrent petition for patients for all patients, including international patients. The U.S. petition site is a formal White House process. If signatures on any petition reach 100,000, the White House will issue a response. The threshold used to be much lower. but people abused the system and posted ridiculous petitions.

I just realized one goal I definitely forgot: pilot projects.


@Gingergrrl Thank you so much for the supportive and encouraging comment. The goals were created by all of us. I had an initial list, but that group above contributed/modified many more goals. I then compiled them. Thanks goes to everyone. This discussion has run well when I'm not around, which is a lot of the time

Everyone is welcome to contribute in positive fashion to this ongoing process. I didn't tag the many people who have been liking comments, but should they want to be notified for future votes, they can leave a comment, even a very brief one.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
I'd like to do another informal vote to see if we're moving towards consensus/ agreement of our goals.

Excellent, constructive post, oceiv - it's important to keep focused on moving forwards in a thread like this.

We all seem to agree that:
  • We need to take advantage of the publicity surrounding the IOM report to push for increased research funding**
  • [...]
  • There are disagreements about the IOM report and it has been divisive. **Therefore, we're not taking a position on the report
I think I made this point on another thread, but the media interest in the IOM report has passed. We've missed that boat, pretty much. The only use of the IOM report that can be made now is the report itself, not the media interest in it.

I agree that the recommendations in the report over the name and the criteria are divisive. But I hope that we can agree with the statement in the report, based on the research review, that our disease is clearly organic and devastating, and seriously underfunded,

The question is, can we all agree to exploit that aspect of the report in a way that people who oppose the name and definition can support?

Sorry if I'm going around in circles or have taken the discussion back - I don't have time to reread the whole thread and these issues have been popping up on various threads, I think (unless I'm just confused).
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
The U.S. government currently has a petition site. It's targeted towards Americans, but we could do a concurrent petition for patients for all patients, including international patients.

The UK also has a site to petition parliament.

I didn't tag the many people who have been liking comments, but should they want to be notified for future votes, they can leave a comment.

I agree with @aimossy that while it's good to draw up a general list of what we can agree on (an advocacy programme, in other words, not just a single action), it's important to choose one goal and act on it. My vote (and perhaps we should vote) would be this goal of research funding.

Perhaps we on this thread could come up with a draft call for funding that everyone could agree on, regardless of their position on the report (or perhaps most of those who oppose the name/criteria, given that we're never going to get total agreement on anything, as @alex3619 said). Then we could start a new thread for it, to get the attention of everyone who is interested in that (more than are reading this thread, probably) and have further discussion: and then possibly a formal poll using PR's poll function to gauge support more broadly and accurately.

Once we had a well-functioning research message, we'd be good to go with pushing it out (with edits for non-US versions).

The key thing would be to write it in a way that doesn't imply that anyone who signs it supports the report. But without mentioning the report, it would seem to me to be as doomed to failure as all our previous attempts.