Spring CFSAC 2013 Meeting live streaming starting today - Weds 22 May

[Mark]

Eileen Holderman had to fight for a few minutes of the CFSAC meeting's time while another patient's testimony was being graciously accommodated. What Eileen claimed seemed obvious to me, that her appropriate behaviour was being challenged because of a difference of opinion. She refused to accept that a CFSAC recommendation had been achieved, and with my life on the line, I happen to agree with her.

You can measure any group by the way that it handles legitimate dissent.

I realise that my posts above might well be seen by some as unsupportive of Eileen Holderman so I want to make it clear that I don't mean any of what I've said as taking sides against her. I really don't know what went on and I don't actually want to 'take sides' at all. I respect everyone on that committee very much, as I've said, and I'd need very clear evidence to conclude that anyone was in the wrong. I think they are a diverse group of people with diverse backgrounds and contexts and I think it's important for us that they all work together. So mainly, I just hope they work this out.

Thinking about all this, I keep coming back to the thought that the real issue of the CFSAC recommendation(s) is the right starting point for making sense of all this. Because I absolutely agree that the CFSAC recommendation on the stakeholder workshop on case definition has not been achieved. That is quite clear from the text of the recommendation and the response, which I posted above. I have not seen the revised 'priority recommendations' list, and I have not seen whether it's stated there that this recommendation has been achieved. My opinion is clear that it has not been achieved. If we find any recommendations that have been removed, or have been marked as achieved when they have not been, then we should campaign for them to be reinstated. If (behind the scenes) that was what Eileen was arguing, and if the chair and deputy chair were arguing against that, and if that issue has somehow been closed down and the priority list has been 'fixed', then I absolutely support Eileen's position. But we need to confirm whether that really is the case first before making that argument.

 

[Mark]

If you check the past minutes, I believe that you'll find that we've had that discussion before.

I think I've read every post on this thread, and I can't see anywhere we've discussed how the NIH grant-approval panel is selected. If that has indeed been discussed, please could you point out where?

 

[Mark]

Ah...perhaps you mean the past minutes of CFSAC meetings? Any idea when? Don't really have time to read through them all...

 

[JayS]

The question that arose for me last year after the meeting is still in place after this one -- Does this committee, in fact, actually accomplish anything for patients?

Well, I hate to be so, um, negative, but, so far as I can see, no. Nothing, zero, not now, not ever. Except for one thing: it draws us like flies to our computers, draws a few others down to DC to pour their hearts out, spikes everyone's blood pressure, aggravates the hell out of some of us, and leaves some, I suppose, feeling like they've accomplished something. I suppose it feels good to rant, but, outside of that, my answer is no.

Patients, advocates, and committee members put in a lot of effort preparing for and during the CFSAC meeting, but I'm not seeing any substantive results for all that effort.

I don't see any results for all that effort. Certainly nothing has changed on the ground. Recommendations are passed up the chain, only to die. And people spend time on this like it's going to make a difference, because they believe it will. I'm far too cynical. That last patient who called in can't get in to see a physician that will even acknowledge the disease. This is in 2013, which means we've only had two years so far of every argument against PACE also amounting to zero results. Nobody pays attention--argue against the Lancet?--and nobody cares. (The 'unique proteins in spinal fluid' study came out at the same time as PACE; maybe that led some segment of medical science to alter their views on CFS--forget ME--but if that's the case, I'm not aware of it, and I don't think anyone else is, either) Nothing has ever made a difference, and the one item that had a chance to make that difference imploded, on two different occasions. Oh, I'd love to be wrong about this. But I can't imagine anything changing anytime soon.

The CFSAC is looking more and more to me to be a placebo committee, despite the efforts of many of the committee members.

It looks to me like it was designed that way.

 

[Sing]

Quoting from Mark's Post 111:

" It seems to me that this is the biggest thing that the committee needs to work on: careful and detailed follow-up on the responses to its recommendations, re-iteration of recommendations where responses are inadequate, detailed examination of the text of recommendations and responses, and perhaps most importantly a good structure for doing that as a matter of routine during its meetings. Useful though the information sessions are (such as the medical insurance presentation and the discussion about clinical practice) I would prefer to see the committee focus the vast majority of its time on substantive and constructive discussions about the recommendations and the responses to them - since that is the primary if not sole purpose of the committee."

Thank you for your analysis Mark. This gives me a fuller picture about where things need to go with the work of CFSAC.

In addition, with regard to the allegations of threats and noncooperation across institutions and departments, what I am wondering is if we could as a group let our advocates at the meeting know that we are concerned by what we heard and ask if there are any ways we could be more supportive of them? Are there things we could do to not only help our advocates but further the goals of CFSAC?

I hope we don't just despair or move into anger and blame (my common reactions too) but see if there are ways we can contribute to the process. On a positive note, I saw more progress and cause for hope in this meeting than in previous years, despite its evident difficulties.

 

[Mark]

In addition, with regard to the allegations of threats and noncooperation across institutions and departments, what I am wondering is if we could as a group let our advocates at the meeting know that we are concerned by what we heard and ask if there are any ways we could be more supportive of them? Are there things we could do to not only help our advocates but further the goals of CFSAC?

I think those are very good questions and I would like to see a discussion about that (and then, some action ). We have proposed establishing an 'Advocacy Group' within PR, that works on this. We need some model whereby the wider membership, and a working group within it, can prepare submissions to CFSAC. These could be papers that the board, the advocacy group, and the membership could all endorse (sign). The committee also has this new requirement to present some kind of rationale, or evidence, for its recommendations, and Gailen Marshall said that yes, absolutely, the CFSAC workgroups that will be working on this are free to involve anybody they want from outside of CFSAC. I would like to see us working on these things directly. From what I've seen, the committee would very likely be receptive to what we have to contribute. I hope the other organizations are thinking in the same way and that we'll all be working together on this as well. We can even submit recommendations to the committee for their consideration. These are things that should be a year-round task. I think the committee has been challenged to provide this extra evidence, and along with that there's a challenge to all of us to up our game, to work on getting a high quality of evidence-backed recommendation in between the meetings, and to follow up and support recommendations with campaigns from the wider community.

I know that people are rightly sceptical that CFSAC is toothless, it's just being rebuffed, it's hitting a brick wall. I do see that, I really do. But what to do? Give up? Or up your game? Yes, CFSAC has made many recommendations that have not progressed. Have those recommendations typically been backed up by co-ordinated campaigns from organizations and advocates in between the meetings? With evidence-backed papers, letter-writing campaigns, in support of them? I expect somebody's going to give me an example where all of this was done and it got nowhere...but still, I don't see another route to change and I think it just means we have to keep at it and do a better and better job of advocating for specific campaigns.

Starting point for me is that list of recommendations. I think most of what we want is there in that record, somewhere. We need to organize to decide our own priorities out of that list, and campaign effectively for those. Look at the responses to those responses, and respond again. Start by going through all the recommendations, look at where each has got to, and think about what needs to be done to push them forward, or get around any objections that came back from the federal bodies. I know many people are weary and dispirited and think we've done all we could do, but I think there is an awful lot more we could be doing. It's wrong that we have to work so hard to achieve this when we are sick, but I don't see what other options we have. Giving up is not a good one. More aggressive campaigns like non-violent direct actions, if they are feasible, are complementary, not alternatives: you always have to be clear what you're campaigning for and it needs to be feasible to implement and command widespread support if it's to have a good chance of success.

So: practical starting points: some threads to examine the recommendations? Some volunteers for the advocacy group? Contact lists for the committee members and federal department contacts? Organize standard letters to be sent to those people? Any other ideas?

 

[JayS]

Sometimes, if you choose to take sides, you are deciding to fuel conflict which may very well be counter-productive to your aims.

It could be that we have different aims.

You don't always have to take sides, and if you do so when it's not appropriate, you run a considerable risk of friendly fire.

I'd take my chances. CFSAC is worse than useless. It leads people to believe that it can make a difference, can accomplish something. Since it never has, I have no reason to believe that it can. Actually, I think it's doing, very well, what it was designed to do, which is to appear to give the impression that it is doing something, or at least capable of it. Maybe I used to feel that way. I no longer do.

Do you have somebody suitable in mind within the NIH who you think would do a better job than Susan Maier?

No.

Do you think that, if she resigned, her replacement would be more, or less helpful to us?

I don't think it would matter one way or the other.

I think those are very important questions for anybody who cares about achieving as much as is possible. I like to be confident as to whether what I'm asking for will make things better, or worse.

I'm fairly confident it doesn't matter. But I didn't ask for her to resign. What I did say was that if whatever she's dealing with for serving is that much of a problem, then why be there if she doesn't want to be there? Don't. Life is too short. I wouldn't hold it against her if she left. Nor anyone else on that committee.
That said, since I didn't ask her to sacrifice her weekends for my sake, I'm not particularly interested in her problems. I'd gladly trade places with her in a heartbeat. Maybe then she'd have a better understanding of what it's like to hear someone like her tell people they need to spur their own research when nobody wants to spend months writing grants that will be turned down by panels comprised of people whose understanding of ME is likely nil and whose understanding of CFS is most likely no greater than what one finds on the CDC website.
I have more confidence in my own speculation than I once did.

Susan Maier's comments were passionately expressed: she was asked what factors, in her experience, make the most difference to the amount of funding allocated to various different diseases. Her answer - and she's in a good position to know - was strong and clear: she said that - in general across all budgets - the basic way it works is this: if lots of excellent applications are received, exceeding the allocated pot of funding, then the next time round that pot will be increased. That sounds very believable indeed to me, and I do believe that she was honestly and straightforwardly giving her opinion there: in fact, I believe that's true and it's a very valuable insight.

This is very similar to telling a pool of job applicants with no experience that the best way to get a job is to have experience. Or telling people who can't get a credit card (I'm dating myself) because they have no credit history that the best way to establish credit is to use a credit card wisely. It makes sense on paper. In reality, it's not only 'not so simple,' it's disingenuous, or, if she actually believes what she's imparting is legitimately applicable to the situation, bizarrely naive. I mean, I'm going to go out on a limb and presume that she knows more about it than Pat Fero does.

Now: two researchers then challenged this and pointed out that excellent applications by them (and given who they were, I don't doubt at all that they were excellent) had been turned down by NIH in the past (and, indeed, in the latest round) with the cited reasons for rejection being questionable and political - in particular it seems that some of the reviewers (as with the dentists example) did the same kind of thing we're familiar with hearing about in the UK: there are people on these panels who are basically giving excellent biomedical ME/CFS research applications 0/10 because (eg) they use the CCC not Fukuda and they claim that CCC is not a recognised criteria and it's therefore a bad application.

I have to believe that most researchers are going to be aware that CCC is not something that's going to be approved--why would it be? They should have known that going in. It has to be Fukuda plus something else. I suspect this is not a good explanation for large numbers of denials. I could be wrong.
My view would be more like, the prevailing view in medical science (and society at large) that this is a psychiatric illness leads to a biased consensus that feels that other approaches are simply inappropriate. After all, chemotherapy drugs such as Rituximab, for instance, are not prescribed for psychiatric patients; and it was only 7 years ago that Bill Reeves said that 84% of his Empirical cohorts didn't even know they were sick at all. Why, then, would they approve anything for CFS much heavier than coping strategies, or brain scans on poker players?
No, I have no idea what the people on those panels truly believe about CFS. But, yes, I firmly believe that, by and large, their view is rather dim. It almost wouldn't make sense that medical experts called in to evaluate these proposals would hold views far outside the medical mainstream. I trust I don't have to argue the point as far as how the medical mainstream views this illness.

I have no problem believing that both perspectives (Maier's and the researchers) are accurate. That is: yes, the way to get more funding is to get more grant proposals submitted and funded, and there aren't enough being submitted, and that's crucial to getting more funding - but at the same time, yes, one reason why a lot of people don't submit is that they have found that they don't get funded because the reviewers have a political perspective on ME/CFS that is antagonistic towards research using the CCC.

It appears we agree.

That discussion was just starting to get interesting, at that point, but unfortunately it didn't move on from there; I'd have liked to then hear questioning of Maier regarding the selection of those who approve/disapprove grants and what the issues might be there - and how that situation might be changed. And a critical question to ask would be: does Maier have the power to remove those dissenting grant reviewers? Because it's only her fault that this is happening if she does...

I don't think it can or will be changed.
I doubt it.
I don't think so. I do think she's at least honest enough that she might look to change something if she had the power. I believe she honestly thinks that since everyone else has to operate under the same rules, that we should have to, also. This has never been a disease amenable to playing by any usual rules, and even attempting to do so hasn't ever really gotten anyone too far.

But overall I didn't see anything to make me doubt that Susan Maier is working hard, in good faith, to try to help us. There are road blocks within all the agencies; there are political realities that people who work there have to deal with. I don't think it would be fair or appropriate - or helpful to us - to scapegoat Maier for those issues, and I don't know, but I suspect, that it would be very much shooting ourselves in the foot if people try to do so because I think it's very likely she's as good a resource as we could have within the NIH to actually solve these problems.

That about sums it up for me. Unless she were replaced by a patient, a caregiver, an advocate, or one of the very small numbers of physicians who acknowledge what ME is, she is as good as we'll get (and needless to say, it's supremely unlikely any of those hypothetical NIH reps will ever sit in that chair). Nevertheless, I won't soon forget her anger, and, as such, I'm afraid I'm going to have to cross her off my Christmas list.

 

[JayS]

Oh, yeah, one last thing. That $5 million a year they fund? I see no reason to believe we wouldn't be any better or worse off if it was zero dollars. If anything's going to make a difference, it will be private money. So long as they spend one penny, they can always say the applications that were turned down weren't good enough. I'd almost prefer there be no pretense that they're interested in funding this research. So long as they fund even one grant proposal, they'll always be able to say they tried. Like Al Pacino said in Dog Day Afternoon, 'Kiss me.' Seriously, I'd almost prefer it if they didn't even bother with us.

 

[Hope123]

The question that arose for me last year after the meeting is still in place after this one -- Does this committee, in fact, actually accomplish anything for patients? Patients, advocates, and committee members put in a lot of effort preparing for and during the CFSAC meeting, but I'm not seeing any substantive results for all that effort.
.

People who know me offline know that I am on of the bigger critics of CDC's website but I do have to say, even if the Toolkit has not been removed (and it should be unless modificaitions are made), other sections of the website have improved. For example, the continuing medical education section for clinicians now mentions the Canadian Consensus Criteria, some of the biological abnormalities in ME/CFS are acknowledged, and there is a short if not detailed section acknowledging that other treatments like antivirals, immunomodulators, are being used or studied. Do they have the depth of information or exact statements you or I would prefer? No. But it's better in some ways. Statements do need to be more consistent over the entire website. CDC website changes are one of the focuses of Eileen's subcommittees. Check it out:

http://www.cdc.gov/cfs/education/diagnosis/index.html [hit "launch course"]

In addition, several committee members commented, after Mary Schweitzer's testimony, that exercise is harmful if not carefully done and perhaps a "black box" warning (much like what happens on drug labelling when there is a serious reaction) around exercise therapy needs to be placed in those sections around exercise. The response from the CDC rep Dr. Ermias Belay was they would consider it. While that may still mean no response and I was hoping for it to be further discussed during the 2nd day, at least those statements are on the record.

In addition, the posting of the IACFS/ME Primer on the National Guideline Clearinghouse website was prompted by CFSAC recommendations. And it was mentioned during this meeting that CDC, which usually doesn't link to non-government websites, can link to the Clearinghouse because it is a federal website so people accessing CDC website can get to the Primer.CDC will not link directly ot the Primer itself.

The challenge I see to getting more NIH applications is that if a field has been neglected for 25 years, there will be few scientists overall that are trained, have mentors experienced with CFS, or have even heard of CFS. NIH needs to establish some sort of training grant support or career development grants for new or existing scientists to have the time and resources to get up to speed or to concentrate on CFS. The type of grants NIH puts out for CFS mostly are known as RO1 grants which are for specific projects, what they need are so-called "K" grants. Young scientists do not just suddenly get up one day and decide to do CFS research (unless they are personally touched) without having had professors or mentors mention it to them.

http://grants.nih.gov/grants/funding/funding_program.htm

 

[SOC]

Hope123
Thank you for pointing those out.

In addition, the posting of the IACFS/ME Primer on the National Guideline Clearinghouse website was prompted by CFSAC recommendations. And it was mentioned during this meeting that CDC, which usually doesn't link to non-government websites, can link to the Clearinghouse because it is a federal website so people accessing CDC website can get to the Primer.CDC will not link directly ot the Primer itself.

That alone is worth a substantial part of the effort put in by and for the CFSAC.

 

[Kati]

The question that arose for me last year after the meeting is still in place after this one -- Does this committee, in fact, actually accomplish anything for patients? Patients, advocates, and committee members put in a lot of effort preparing for and during the CFSAC meeting, but I'm not seeing any substantive results for all that effort

I think it is very important to find out why HHS was trying to get CFSAC members to vote a past recommendation as completed- because indeed, the CFSAC has not been accomplishing anything for us. It is time that HHS get a reality check and start doing something about the recommendations.

For one, they keep on saying there is no money- they've been saying that for a decade. Yet the NIH gives billions for health care research, they just can't get beyond 6 millions (now less) for ME and CFS.

 

[Mark]

JayS, I don't really want to be arguing with you and I suspect we agree on everything substantial (including our aims and our frustration and anger with the funding situation). I think the only real point of disagreement is that I'm saying that I think (but don't know for sure) that Susan Maier may well be as good a rep we can get from the NIH, that she cares, and that if she weren't there and someone else was, that might well be to our detriment. I appreciate the feeling that what we get from CFSAC and from the agencies is as close to nothing as makes no great difference, but I do think it's better than nothing (Hope123 just gave some good examples of small signs of progress). I'll reply to some of your replies to me above, but hoping you see this as a conversation not an argument.

It could be that we have different aims.

I doubt we have different aims, I hope not. My aims are the betterment of people with ME, CFS, ME/CFS, whatever: more and better research, more and better treatment, recognition, respect, and ultimately an end to these diseases and for all of us to get well again. I doubt we differ in what we want, but if you think we do differ based on what I've just described, that might be worthwhile to explore.

I'd take my chances. CFSAC is worse than useless. It leads people to believe that it can make a difference, can accomplish something. Since it never has, I have no reason to believe that it can. Actually, I think it's doing, very well, what it was designed to do, which is to appear to give the impression that it is doing something, or at least capable of it. Maybe I used to feel that way. I no longer do.

I understand the sentiment, but I think 'taking your chances' on a question like that isn't a responsible approach. Hope123 has described how CFSAC has led to positive changes, so I think there's good evidence that CFSAC can make a difference. Yes, it's a small difference, it's not as much as we want, nowhere near as much. But I just think the reality in the kind of situation we're in is that change is not going to come as a sudden big leap forward (except from a sudden medical breakthrough); change in these situations is small, incremental, and requires years of work by many people. I do think progress has been made and is being made. It's terribly slow, I know, but that's just reality; a journey of a thousand miles starts with a single step, and all that. If anyone knows a good short-cut, I'm all ears...

The way that CFSAC works is the same as all the other 200-odd health committees: they are advisory only. I don't see it as a placebo but it's not a powerful democratic institution either. Looking in from the UK, though, we can only dream of what you have in CFSAC, so maybe that's why I feel more positive about it. Just as it is with our democracies: they're not much of a democracy really, but those without democracy would say we should be grateful for what we have even if it's far from perfect.

I think you're basically saying that the whole thing (CFSAC) makes no difference, achieves nothing, and so no kind of change to it would matter. I understand your disillusionment, but I do still think there's a risk in giving up on it, in that it produces benefits we don't always notice, and if we lost those we would have less prospect of an improvement in the overall situation.

I'm fairly confident it doesn't matter. But I didn't ask for her to resign. What I did say was that if whatever she's dealing with for serving is that much of a problem, then why be there if she doesn't want to be there? Don't. Life is too short. I wouldn't hold it against her if she left. Nor anyone else on that committee.

I wouldn't hold it against any of them either; people do as much as they can and as much as they can bear. Why be there if she doesn't want to? I think she wants to be there because she cares; I can't think of a reason for her to be there other than a desire to help. Am I right in thinking they don't get paid for their work on this committee? I thought I heard that, but I might be wrong.

I have to believe that most researchers are going to be aware that CCC is not something that's going to be approved--why would it be? They should have known that going in. It has to be Fukuda plus something else. I suspect this is not a good explanation for large numbers of denials. I could be wrong.
My view would be more like, the prevailing view in medical science (and society at large) that this is a psychiatric illness leads to a biased consensus that feels that other approaches are simply inappropriate. After all, chemotherapy drugs such as Rituximab, for instance, are not prescribed for psychiatric patients; and it was only 7 years ago that Bill Reeves said that 84% of his Empirical cohorts didn't even know they were sick at all. Why, then, would they approve anything for CFS much heavier than coping strategies, or brain scans on poker players?
No, I have no idea what the people on those panels truly believe about CFS. But, yes, I firmly believe that, by and large, their view is rather dim. It almost wouldn't make sense that medical experts called in to evaluate these proposals would hold views far outside the medical mainstream. I trust I don't have to argue the point as far as how the medical mainstream views this illness.

Of course you don't have to argue any of that with me; you're quite right with all of that, and this is the fundamental problem. It's a widespread prejudice, there is a very significant body of opinion which still has old-fashioned views about ME/CFS, which is why breaking it down is incredibly difficult and takes a long time.

I don't think it can or will be changed.
I doubt it.
I don't think so. I do think she's at least honest enough that she might look to change something if she had the power. I believe she honestly thinks that since everyone else has to operate under the same rules, that we should have to, also. This has never been a disease amenable to playing by any usual rules, and even attempting to do so hasn't ever really gotten anyone too far.

If you are saying that the prejudice and opposition to biomedical ME/CFS research cannot and will not be changed (I think that's what we're talking about here), then it seems your points boil down to just a feeling of complete despair. I really do sympathise and understand that, honestly I do, and I feel that way a lot of the time myself. But I can't just give up. And most of the time I do think - really I do think this is true - that things can and do change and they are changing, just incredibly slowly and too slow for many of us to notice the difference.

I think it's appropriate to compare the situation we talked about, re: attitudes of grant reviewers and prejudice about ME/CFS, with the history of issues like women's rights, or racism, or homophobia. Those issues have taken generations, centuries, for attitudes to gradually and slowly change, and what's driven the change has been long-suffering battling away by millions of people throughout history - and it still goes on. Yes, I know: we can't afford to wait that long, people are dying. Just as people died (and still die) in their campaigns for their rights in those other issues, and just as people lived and died and never lived to see the breakthroughs they fought for. God knows it's not right or fair, and it's not enough. I'm not arguing with you on any of that, really I'm just wanting to encourage you and everyone to keep plugging away because that's all we can do, and we can't afford to give up, either; that's how changes will come, eventually. That's all I'm saying, really: please don't despair, don't give up, persevere...

Unless she were replaced by a patient, a caregiver, an advocate, or one of the very small numbers of physicians who acknowledge what ME is, she is as good as we'll get (and needless to say, it's supremely unlikely any of those hypothetical NIH reps will ever sit in that chair). Nevertheless, I won't soon forget her anger, and, as such, I'm afraid I'm going to have to cross her off my Christmas list.

The chair we're talking about is the NIH rep on the committee. Basically all I'm saying is - to try to agree with you - in my opinion too she's probably as good as we will get, and to go a little further, quite likely a whole lot better than the alternatives we might get. Show me a better option and I'll take it. And in the end, while I agree with you that what we are getting (in terms of funding from the NIH, which is the bottom line here) is nowhere near enough - really, scandalously nowhere near enough, it's an absolute disgrace, beyond words - all I'm interested in is ways that the situation can be improved, in however small a way. I do know the problems, and how wrong it all is, but I want to hear about solutions; big, sudden ones if they exist, and small, slow ones if that's all that's achievable. We have to keep moving forward and not give in.

 

[Mark]

Thanks very much for your post on the achievements of CFSAC, Hope123. Yes, small bits of progress, but progress nevertheless.

People who know me offline know that I am on of the bigger critics of CDC's website but I do have to say, even if the Toolkit has not been removed (and it should be unless modificaitions are made), other sections of the website have improved. For example, the continuing medical education section for clinicians now mentions the Canadian Consensus Criteria, some of the biological abnormalities in ME/CFS are acknowledged, and there is a short if not detailed section acknowledging that other treatments like antivirals, immunomodulators, are being used or studied. Do they have the depth of information or exact statements you or I would prefer? No. But it's better in some ways. Statements do need to be more consistent over the entire website. CDC website changes are one of the focuses of Eileen's subcommittees. Check it out:

http://www.cdc.gov/cfs/education/diagnosis/index.html[hit "launch course"]

I had a glance and got the same impression that it is very slowly improving. Nowhere near enough, but it's improving. So: press on, a little more, and a little more...maybe one day it will be any good...

In addition, the posting of the IACFS/ME Primer on the National Guideline Clearinghouse website was prompted by CFSAC recommendations. And it was mentioned during this meeting that CDC, which usually doesn't link to non-government websites, can link to the Clearinghouse because it is a federal website so people accessing CDC website can get to the Primer.CDC will not link directly ot the Primer itself.

This one sounded like a good one to me when it was mentioned in passing (blink and you'd have missed it): another little CFSAC achievement and one which opens another door. I expect your version is more accurate than my understanding of that little comment, but I thought that Belay's answer was going slightly further and suggesting that the CDC can now link to the primer itself. I guess not then. I vaguely recall the previous discussion at a previous meeting: the CDC (under their rules) can only post to stuff that has gone through clearance and been sanctioned by a federal agency (or something similar). This did seem like the posting of the primer on the NGC site had moved things forward slightly, and when Belay confirmed this was now possible, it should have been followed up by a recommendation that this should happen and that the link should be prominent. An example of the thing of following up and continuing with the path forward...lots of little steps forward, and no wasted energy banging heads against walls...

The challenge I see to getting more NIH applications is that if a field has been neglected for 25 years, there will be few scientists overall that are trained, have mentors experienced with CFS, or have even heard of CFS. NIH needs to establish some sort of training grant support or career development grants for new or existing scientists to have the time and resources to get up to speed or to concentrate on CFS. The type of grants NIH puts out for CFS mostly are known as RO1 grants which are for specific projects, what they need are so-called "K" grants. Young scientists do not just suddenly get up one day and decide to do CFS research (unless they are personally touched) without having had professors or mentors mention it to them.

http://grants.nih.gov/grants/funding/funding_program.htm

Sounds like a recommendation worth drafting, with supporting evidence...

 

[Ember]

Was the effect of Dr. Maier's outburst to deligitimise protest?

 

[Sasha]

Looking in from the UK, though, we can only dream of what you have in CFSAC, so maybe that's why I feel more positive about it.

I agree - the FDA workshop, CFSAC... they look like a happy dream from here. PWME and their advocates actually being able to attend a meeting - a meeting actually open to the public! - and able to put questions to representatives from major government funding and regulatory institutions. Amazing! Able to give testimony about the devastating nature of the illness. Amazing! And for all that to be live-streamed, and then put up on the net for everyone to see so that if a question is dodged or some appalling piece of uselessness comes out then at the very least it's happening in public and not behind closed doors and the Official Secrets Act... amazing.

I understand the frustration at the slow rate of progress but there is at least some progress and the pressure is starting to build more from all sorts of different directions.

The meeting also provides a clear target for advocacy and the public nature of these things means that people can see and get to know their advocates (not just the PWME but their carers/supporters and the doctors working on our behalf). That's very important in building an advocacy community and getting patients behind it, I believe. We have nothing like that in the UK.

Mark is right that we need more people working on advocacy. People are making great, well-researched, thoughtful and insightful points on both this thread and the one on the joint advocates' letter about the case definition. If you reading this are one of them, I strongly urge you to get in touch with Mark about joining a Phoenix Rising advocacy group. Even if you can only give a very little time and that sporadically (which is how most of us who volunteer here contribute to Phoenix Rising) it all adds up and makes all sorts of things possible. Please do contact him for a discussion on how you might be able to contribute.

 

[Sasha]

People who know me offline know that I am on of the bigger critics of CDC's website

Good points about the improvements to that, which indicate that pressure helps. But probably more pressure helps more. If we had a big advocacy campaign directed at that - or indeed a series directed to back up any important CFSAC recommendation that has failed to be implemented - it could help.

Changing the content of that website seems a good target for an achievable, relatively quick win. If we had an advocacy campaign with patients piling on like they have for the FDA stuff - that could help.

We've seen mass activism start to work for us - we can apply that to the CFSAC too.

Another reason why we need an advocacy group within PR and why, if you're interested in advocacy and reading this, you should contact Mark and ask about volunteering.

 

[Ember]

We have nothing like that in the UK.

Take some credit. You have Invest in ME, and we have nothing like that on this side of the pond.

 

[Sasha]

Take some credit. You have Invest in ME, and we have nothing like that on this side of the pond.

Invest in ME is a great organisation but it's a charity that funds research and runs a conference. It's not a government-run, publicly open committee with powers to make recommendations at which patients can confront and attempt to influence representatives of our government health institutions face-to-face.

In an ideal world, we'd all have both.

 

[Seven7]

Ok in my perspective I feel overwhelm ...ation from all parts. This is too complex with too many issues and we want it all now. TRUST me I understand the urgency but I feel if we are more focused as a group we can make a bigger difference. So lets say as a community what we need first is a case definition. Then the patients testimony follow a theme and we get aggressive on one point at a time (3 Tops), and you can throw concise stuff like take toolkit down, that is a clear actionable item and don't need that much planning from their part. One little battle at a time that is how you win wars, this whole way we are doing things has not been working, I think is too many needs for everybody.

When I see the CFS Specialist, We do 3 things at a time. She asks me what are your top 3 complains. At first I thought at this rate we will never get it done!!! It drove me insane. Her way has gotten me farther faster than when I was trying to fix it all at once.

Just a thought!!!

 

[JayS]

JayS, I don't really want to be arguing with you and I suspect we agree on everything substantial (including our aims and our frustration and anger with the funding situation). I think the only real point of disagreement is that I'm saying that I think (but don't know for sure) that Susan Maier may well be as good a rep we can get from the NIH, that she cares, and that if she weren't there and someone else was, that might well be to our detriment. I appreciate the feeling that what we get from CFSAC and from the agencies is as close to nothing as makes no great difference, but I do think it's better than nothing (Hope123 just gave some good examples of small signs of progress). I'll reply to some of your replies to me above, but hoping you see this as a conversation not an argument.

I doubt we have different aims, I hope not. My aims are the betterment of people with ME, CFS, ME/CFS, whatever: more and better research, more and better treatment, recognition, respect, and ultimately an end to these diseases and for all of us to get well again. I doubt we differ in what we want, but if you think we do differ based on what I've just described, that might be worthwhile to explore.

I understand the sentiment, but I think 'taking your chances' on a question like that isn't a responsible approach. Hope123 has described how CFSAC has led to positive changes, so I think there's good evidence that CFSAC can make a difference. Yes, it's a small difference, it's not as much as we want, nowhere near as much. But I just think the reality in the kind of situation we're in is that change is not going to come as a sudden big leap forward (except from a sudden medical breakthrough); change in these situations is small, incremental, and requires years of work by many people. I do think progress has been made and is being made. It's terribly slow, I know, but that's just reality; a journey of a thousand miles starts with a single step, and all that. If anyone knows a good short-cut, I'm all ears...

The way that CFSAC works is the same as all the other 200-odd health committees: they are advisory only. I don't see it as a placebo but it's not a powerful democratic institution either. Looking in from the UK, though, we can only dream of what you have in CFSAC, so maybe that's why I feel more positive about it. Just as it is with our democracies: they're not much of a democracy really, but those without democracy would say we should be grateful for what we have even if it's far from perfect.

I think you're basically saying that the whole thing (CFSAC) makes no difference, achieves nothing, and so no kind of change to it would matter. I understand your disillusionment, but I do still think there's a risk in giving up on it, in that it produces benefits we don't always notice, and if we lost those we would have less prospect of an improvement in the overall situation.

I wouldn't hold it against any of them either; people do as much as they can and as much as they can bear. Why be there if she doesn't want to? I think she wants to be there because she cares; I can't think of a reason for her to be there other than a desire to help. Am I right in thinking they don't get paid for their work on this committee? I thought I heard that, but I might be wrong.

Of course you don't have to argue any of that with me; you're quite right with all of that, and this is the fundamental problem. It's a widespread prejudice, there is a very significant body of opinion which still has old-fashioned views about ME/CFS, which is why breaking it down is incredibly difficult and takes a long time.

If you are saying that the prejudice and opposition to biomedical ME/CFS research cannot and will not be changed (I think that's what we're talking about here), then it seems your points boil down to just a feeling of complete despair. I really do sympathise and understand that, honestly I do, and I feel that way a lot of the time myself. But I can't just give up. And most of the time I do think - really I do think this is true - that things can and do change and they are changing, just incredibly slowly and too slow for many of us to notice the difference.

I think it's appropriate to compare the situation we talked about, re: attitudes of grant reviewers and prejudice about ME/CFS, with the history of issues like women's rights, or racism, or homophobia. Those issues have taken generations, centuries, for attitudes to gradually and slowly change, and what's driven the change has been long-suffering battling away by millions of people throughout history - and it still goes on. Yes, I know: we can't afford to wait that long, people are dying. Just as people died (and still die) in their campaigns for their rights in those other issues, and just as people lived and died and never lived to see the breakthroughs they fought for. God knows it's not right or fair, and it's not enough. I'm not arguing with you on any of that, really I'm just wanting to encourage you and everyone to keep plugging away because that's all we can do, and we can't afford to give up, either; that's how changes will come, eventually. That's all I'm saying, really: please don't despair, don't give up, persevere...

The chair we're talking about is the NIH rep on the committee. Basically all I'm saying is - to try to agree with you - in my opinion too she's probably as good as we will get, and to go a little further, quite likely a whole lot better than the alternatives we might get. Show me a better option and I'll take it. And in the end, while I agree with you that what we are getting (in terms of funding from the NIH, which is the bottom line here) is nowhere near enough - really, scandalously nowhere near enough, it's an absolute disgrace, beyond words - all I'm interested in is ways that the situation can be improved, in however small a way. I do know the problems, and how wrong it all is, but I want to hear about solutions; big, sudden ones if they exist, and small, slow ones if that's all that's achievable. We have to keep moving forward and not give in.

I don't see it as an argument, and it's certainly nothing personal. I'm just expressing a strongly held view, and, on this occasion, I'm not giving much thought as to the tone. I usually care about that sort of thing, but not at the moment.

Outside of her extreme anger, let's say I accept your view on Susan Maier. From where I sit it doesn't seem to matter what she thinks, if we ascribe to her the most friendly and positive of motives, because to her the situation remains a matter of there being not enough applications being presented. That to me is a fundamental misreading of a chicken/egg argument, and if that's what she believes, then why sacrifice her weekends? Now, I thought that her anger was directed at Eileen and not Maryanne Fletcher, but, regardless, it was directed at a person who I think understands the problem in a way that she does not.

I have nothing against--for instance--Lisa Corbin, either, but I heard her say that she sees perhaps 2 patients in a week who have what she characterized as 'true CFS,' with the remainder of the CFS 'referrals' that she sees...not being, uh, well, you know. That to me is a person who also lacks knowledge of the disease, and the problem that comes with it. This doesn't surprise me, since she saw fit to mention James Jones without stating that this is an individual who has denied the reality of the disease for decades.

For some reason I have no problem believing that her *non-ME* patients have great respect for, and like her, a great deal, probably with good reason (which is not to say that I would think her *ME* patients would not like her, but I would question whether she truly knows what Ramsay described, given the CME a few weeks ago). There are far more of those than there are of us, all over, thus the 1 million/4 million conflict we've been dealing with for years (with Cort defending use of the 4 million number for 'marketing purposes' on this very website not all that long ago). If the majority of CFS patients are not ME patients, there's another factor that won't do Susan Maier or anyone else any good if they try to argue that research should be funded to investigate what's wrong with 1 million (likely less) ME patients when the larger pool of the other 3 million render biomarker establishment (or a response to a drug in a clinical trial) futile. Of course, this hinders drug development, since there are no established biomarkers after 30 years (and, to boot, there are some who argue that even NK cells will not be reliable, as there are reportedly similar findings in depression, though I would like to believe that Dr. Peterson knows more than they do) no matter how many times people try to argue that there are. So, no target, no drug; needless to say, it wouldn't do any good for those poor folks in Wichita who spend 48 hours a week on work + chores.

All this said, of course, in the big picture, our goals are the same. Granted. But after Thursday, I'm closing the door on ever expecting anything out of CFSAC but more of the same frustrations and headaches we currently endure, and always have. It's not acceptable that Eileen has to deal with this, and that I don't know how many patients have to powerlessly watch this play out, adding unnecessary anger, frustration, aggravation, and, yes, stress. Somehow I don't think Dr. Unger had too much difficulty with what was going on a few feet from her chair. No, I don't know that, but let's just say I can't imagine that would have upset her all that much. File that under more speculation.

But don't mistake my seeming apathy for despair. It's not. Frustration, yes. I just don't see this as a fruitful course of action anymore, if I ever did. Is that throwing in the towel? Perhaps. That's crappy, right? I was always told I have a crappy attitude. My crappy attitude says this is a complete waste of time. Now...as for the idea that it's great that we have this in this country, a privilege not seen anywhere else? Granted. But what good is it if it doesn't mean anything? I would like to think that we do indeed possess the privilege in engaging in participatory democracy. But that's not what this is. What this is, is a charade. In a way I'd almost prefer knowing that a meaningless charade is not available to me, provided, of course, that that's my view of what it is that's going on. People like White & Sharpe have the courage of their convictions--they say boldly what they either know is not true, or they believe in spite of mountains of evidence to the contrary. Wessely's a different animal, in that he argues in circles and always provides himself with an out so he cannot be pinned down on any particular point. This is how Unger operates, in contrast to Bill Reeves. Did you see at the last meeting how Steve Krafchick went around in circles trying to pin her down on some, any, sort of substantive statement on the Toolkit? In the end she was forced to flatly state, 'We're going to leave it up for now.' What he had to do to force that out of her was like water torture. And that's what we get in the end: it's not coming down. Not now, and not ever, if they can help it. CFSAC can do nothing about this, never could.

But what can they do? Do you think there is even one doctor out there who could say 'I learned more about ME/CFS from the Primer that was there because CFSAC recommended it, as opposed to merely what was available on the CDC website'? Maybe I missed it. If anyone could speak to that, I might reconsider. I don't see any evidence that anything they've done has made a difference, and we haven't budged from these large numbers of desperately ill people being treated poorly in doctor's offices, because of the entrenched perception of the illness. I just saw another example--today's dose of reality, if you will:

That's not CFSAC's purview, perhaps. Well, what are they there for, then? Because correcting things like that via whatever means is a huge problem. What can they really do about it? What can they do about anything? What are they there for? If they're there to do anything but give people the impression that they're trying to work on something, then how does a reasonable person not consider it/them to not be a failure beyond belief (not to mention words)?

Now...I try not to get hung up on the seeming futility of, say, the right to vote. Much is made of this--we have a right so many others don't, and it's disgraceful to not exercise it. Fine. But it's hard to just dismiss the argument that it doesn't seem to mean that much when one is in a solidly 'red' or 'blue' state, regardless of one's persuasion (and most of the population resides in states where an outcome seems predetermined, as opposed to a 'swing' state). Some knee-jerk and label people expressing such sentiments as anti-patriotic, or something. Well, I'm prepared to ask what good the right to have a CFSAC is if this is what we're faced with, year after year. The FDA meeting seemed great, right? Well, it was, if you could ignore what was actually being said. Did you see that Bernard Munos published his 'you people can do it and need to shoulder more responsibility' speech yesterday in an Elsevier journal? With the exception of the public comment, just about everything I heard there was either hostile, same old same old from a few of the same people, and patients trying to describe their symptoms, so as to try to educate the FDA folks (and I have long said that in order to even try to describe this disease, one inevitably ends up sounding 'crazy,' at least so far as of the perceptions of others). Then some guy gets up and asks for spit, and it spoke volumes about where we're at. :thumbdown:

I know someone who knew of one of the FDA folks, and recommended I speak with her. I've never spoken with someone more determined to get out of a room and as far as possible away from that venue as quick as she could, as this person was. I mean, I don't mind being blown off, but this was embarrassing. Seriously. Her advice was to speak with Theresa Michele. Yeah, okay, thanks. I'm not even a fan of Hemispherx, but I know when I"m being told to go fly a kite.

I came away from that meeting thinking some good seeds had definitely been planted, and that there was potential that good could come of it. But they didn't have that meeting because of us. They had that meeting because there are a number of diseases being granted the same meeting. Still, I wasn't anywhere near as cynical about it as I am about CFSAC.

Look, you guys do whatever you want. I'm not trying to discourage anybody. I'm not discouraged; like I said before, I think what moves us forward is private money. Initiatives that have nothing to do with government. I do have a concern that there may be some aspects of some of these that may produce research in great conflict with government guidelines, and that brings optimism, excitement, even, but until we see something come of these...we're still left with NIH thinking that awarding $600,000 for 'coping strategies' is money well spent. I saw a lot of 'advocates' awfully excited about $2 million for a psychiatrist to examine brain scans, which was characterized by someone I know as 'something Wessely would do.' So if that's what 'advocacy' is about, then I'm glad I do not now, and never did, think of myself as an 'advocate.'