Article: Letter to Fred Friedberg and All IACFS/ME Officers

You can view the page at http://www.forums.aboutmecfs.org/content.php?274-To-Fred-Friedberg-and-all-IACFS-ME-officers

 

I agree George that its a difficult situation - when I saw the other diseases that get low funding at the NIH - diseases that are like CFS - I again realized what we are up against. The CFSAC panel does not have an easy job. They can recommend...they cannot dictate.

The next year is going to be very interesting. I asked Dr. Freidberg about the RFA for CFS. After the last Conference in 2003 an RFA was promised but he said there was no promise of an RFA after this conference. Honestly, I think we just draw the frigging line right there if there's no major grant announcement. Its time we got some real funding. As the letter writer said - no ones getting any younger around here. We just had a decade in which funding for the NIH just about doubled and funding for declined declined.....and it was already in the pits...that's 10 years - that's pretty ugly....

"funding for declined declined"

Could have been spell check intervening , but the phrase actually speaks the concise truth about how we have been written off.

We are nameless, we are the declined. Lower case, not a name (no face), object of a bureaucratic procedure, not a proper noun.

But somehow we must fight AIDS had a ready made constituency, and people who knew they the clock ticking on them remaining healthy enough to fight for years after diagnosis. We're a mess, mostly. If my experience is any guide, then many (most) of us are using whatever strength is available to have a place to sleep and so on. The brain shuts down early, after virtually any physical exert. It is falling, without ground in sight.

There is a blueprint for fighting for a cure - polio and AIDS being good examples. Who among us has the strength to carry it out?

 

"funding for declined declined"

Could have been spell check intervening , but the phrase actually speaks the concise truth about how we have been written off.

We are nameless, we are the declined. Lower case, not a name (no face), object of a bureaucratic procedure, not a proper noun.

That's very true.

And ability or no ability, we have to do something about it.

I'm just not sure what. I've been emailing news people, an actress, my Senator, advocacy organizations... and I don't seem to get any takers. Some sympathy from one or two organizations (but that issue is outside the scope of this organization), but no advocacy assistance. Not sure who to ask next.

 

"There is a blueprint for fighting for a cure - polio and AIDS being good examples. Who among us has the strength to carry it out?"

The sad truth in this statement lies in the reality that the real professionals have ME! I don't think that individually any of us have the strenght to carry "it" out, but we can "tag-team" those who are in the position of authority, and persist in acting either selfishly or irresponsibly.

Collectively I have been impressed with the talent of the victims of this illness. It is our families (like the Whitmores and others like them) or each of us individuals with professional knowledge who maintain a quest to know more about how to progress with a diagnosis, treatment, and a successful cure. What we lack is the strength, endurance, unity and authority to make change come for our relief.

How do we develop the stage to get a seat at these tables of ex-officio meetings and govenrmental priorities without becoming victimized even more? Pacing works to their advantage and our quality of life continues to suffer. What appears to this newbie is that the new generation of ME patients are not as passive as those who have suffered so long over the past 20 years with a blinded belief that the "Doctor's know best". From the PCP to the Insurance magnants, we have no hope that we could expect any committment for restoring any quality of life in our lifetime. Our confidence is no longer in the medical professionals at all levels of interventions. Unfortunately, the CSFAC meetings are a mere takeoff of the movie "Awakenings". It only brings change for that season, but for who's benefit?

 

Yes, he could run a tighter ship, but give the man some slack, he's a researcher not a parlimenterian. I think part of the problem is that patients expect these researchers to walk on water when they aren't be all things to all people. Obviously patients are frustrated and legitimately so, but taking it out on people who are doing their best with the hand they are dealt is rather ineffective. At least as ineffective as screaming about the way government committee's are run. Expecting more than can be delivered by its very nature is rather counterproductive. And that is my point. Pointing fingers is rarely productive. And the finger pointing on this thread is no exceptions. Or did I miss the earth shaking because this thread changed anything?

Good points - these are mostly researchers. Chris is alot better than the last leader. I think he's quite good actually; I think he has a really tough job because the committee is not in general focused as well as it could be. ALot of this is organizational for me....I just see missed opportunities and, of course, many times I am gladdened by the committees expertise - many times they bring real insights into the process. I feel though that something is missing.

The Trans NIH Working Groups was kind of a watershed for me.....This is the group that controls the budget for CFS at the NIH. I felt it was an opportunity to speak to what is not working from the people who know what is not working. TThey are the ones that communicate directly with the funding bodies. I think they want to assist CFS - but they've clearly been hampered from doing so. The question is why? What are holdups at the NIH that are preventing CFS from being treated as a real disorder that deserves real funding?

I felt giving them a couple of hours and then lining up a series of questions would have worked. If the panel had facts at their fingertips they could use to display their concerns - that would have helped. A key problem is lack of grant submissions to the Review panel. Getting researchers interested in this disorder is a key issue! If they had had the number of grant proposals before them over the past year - and then asked the WOrking Group 'what do you propose to do about this" that would have generated something. At the very least it would have got them talking about - and put them on record about an RFA next year. That is a our single biggest hope for increased funding - the CFS Working Group will the ones that fund it or don't fund it - and there wasn't a single question about that.

It sounds to me like - in order to do that it has to be in the budget now... Is it? No one even knows! No one, at least in public, has asked....maybe its been privately addressed...I don't know but I asked Dr Friedberg, head of the IACFS/ME about it - and he checked wherever he checked - and he didn't think it was a done deal.

I don't know if that Committee has ever met with the CFS Working group before and it may very well be quite awhile before they do so again.

 

I hate to burden all of our docotrs with this CFSAC merry-go-round. They have really taken enough abuse. I'm not familiar with this secret journal he mentions "If the docs hadn't published their own private, unindexed, secret journal with a fringe publisher"

Here is my impression of the CFSAC and CDC. They don't want to do anything and they never intended to do anything. The CFSAC is there to be punching bag and something to point at to say something is being done. So if anybody asks what are you doing for CFS Mr government? Mr government can say, "OH RRIIIIIGHHHTTT... there is this panel called the CFSAC, I think they meet once or twice a year for the last 25 years. GO ASK THEM next year when they meet." HA!

Mr government, the CDC, and CFSAC, have this clever merry-go-round game where the patients get to meet with the CFSAC, an "advisory commitee" with no accountailibty. Then the CDC can point at the CFSAC when anybody asks what is going on. Just round and round.....THe CFSAC is BAsically a phony group set up to make it look like something is happening, and to take the heat and blame so the CDC can go on with creating their phony balony psych studies. When nothing is, or intends to be done. They have designed it to be a passifier for 25 years...While the rest of us have watched our families and docotrs give up on us, and get brain washed into believing the phony studies published by the CDC. HA!

The way to handle this joke of a CFSAC meeting, is to have like a 100 patients and doctors all show up at the CFASC meeting, and testify them the whole thing is a joke very directly. One after another on TV. "CDC and CFSAC, we know this meeting is not intended to get anything done, but to be cover for the CDC. You have been jerking us along for all these years....."ANd then show a timeline project managemnt chart showing how nothing has been accomplished for 25 years. Year after year. ENd of meeting. Then follow up with letters to all the governemnt officails telling them the same thing. The CFSAC and CDC are all Balony.

The only potential savior I can see at this point is the WPI who has figured out the game, and the only way to make progress is to go around the CDC. Then great people like Illa Singh who have put a good box around how to nail down XMRV testing for good. Or amybe if Ilan Lipkin, is really assigned to help solve things, and comes out and agrees that XMRV is real, and follows up with substantial research funding for legitmate studies and the WPI.

I think you have some real points. I would never, ever say the CFSAC is not trying or is not committed - they are all people who have dedicated their time and many of them their careers to CFS. CFSAC is only an advisory committee - the govt can take or reject their recommendations as they will. It is up to us and everybody to cry foul when the govt do nothing. That may be the only thing they will respond to - it's certainly one of the ways we can contribute. We have to keep an eye on this and we should have a page devoted to the CFSAC Committee recommendations and what the govt has done about them...... And act when they don't................

I've been complaining about the panel but we need to get better organized as well.

 

That's very true.

And ability or no ability, we have to do something about it.

I'm just not sure what. I've been emailing news people, an actress, my Senator, advocacy organizations... and I don't seem to get any takers. Some sympathy from one or two organizations (but that issue is outside the scope of this organization), but no advocacy assistance. Not sure who to ask next.

That's more than nothing, and more than I've managed recently.
How about following up the email with paper mail? Physical letters are less common and get more attention, especially if they are not a form letter.

 

We see agreement that the ME/CFSAC committee is not only ineffective but a waste. So what can patients do about it? Let's hear your recommendations. Here are some:

1. Reduce the size of the committee. No group this large is going to do anything but get together and talk and drink coffee, as they have for 20 years. Even the patients' testimonies have remained the same for 20 years. Major change is needed.

2. With a much smaller group, the chair needs to assign individuals to organize an action at every meeting, not a discussion. Discussions must be held offline. Come together with a written plan to implement.

3. Assign an individual to present an agreed-upon plan for the Centers of Excellence at the next meeting and define the funding. And require full funding, not just a beginning. We have already had the Centers, the doctors are all in place, we know how to do this. Require that they be re-funded now.

4. Stop "asking questions" at the meetings and start defining requirements. They not only can demand, it is their task to demand. They are supposed to be telling HHS what they need and how to do it. This takes one meeting. The next meeting should be the HHS response. It would be hard to fill up half a day for a meeting if people just came prepared.

5. Members must focus their comments, especially those who have had ME/CFS. People must be honored for how short and complete their comments are, not for how long they can hold the microphone. The chair can really move this along.

What other ideas do you have and, more importantly, how do we get this across to the committee?

 

Demanding?

We see agreement that the ME/CFSAC committee is not only ineffective but a waste. So what can patients do about it? Let's hear your recommendations. Here are some:

1. Reduce the size of the committee. No group this large is going to do anything but get together and talk and drink coffee, as they have for 20 years. Even the patients' testimonies have remained the same for 20 years. Major change is needed.

Patient testimony remains the same because this disease and the experiences of patients do not change. Apparently you have not attended a meeting if all you think they do is drink coffee.​

2. With a much smaller group, the chair needs to assign individuals to organize an action at every meeting, not a discussion. Discussions must be held offline. Come together with a written plan to implement.

The entire reason discussions other than subcommittee discussion are online is because of FOIA. It's a law. An open government process is one of the hallmarks of a democracy.
​

3. Assign an individual to present an agreed-upon plan for the Centers of Excellence at the next meeting and define the funding. And require full funding, not just a beginning. We have already had the Centers, the doctors are all in place, we know how to do this. Require that they be re-funded now.

The entire point is that this committee, like the other 500 some HHS committees, is they can only recommend they cannot require.

Of the three Centers of Excellence, the one at the University of Washington was run by a psychosocial group; the one in NJ was under the direction of Ben Natelson who changed Universities because the University demanded that he stop work on CFS - however Gundrun Lange is still there. The only intact group at this point in time is in Miami with Dr. Klimas. I think a re-vamped plan for the Centers of Excellence would be appropriate, but demanding won't change anything.​

4. Stop "asking questions" at the meetings and start defining requirements. They not only can demand, it is their task to demand. They are supposed to be telling HHS what they need and how to do it. This takes one meeting. The next meeting should be the HHS response. It would be hard to fill up half a day for a meeting if people just came prepared.

5. Members must focus their comments, especially those who have had ME/CFS. People must be honored for how short and complete their comments are, not for how long they can hold the microphone. The chair can really move this along.

One of the main issues with ME/CFS for most people is the cognitive dysfunction ranging from the annoying to the profoundly severe. You can ask people to be tighter, but demand it? You might as well tell water to run up hill.​

What other ideas do you have and, more importantly, how do we get this across to the committee?

I don't mean to shoot you down, you have the kernel of some good ideas, but I would recommend starting by listening to committee members who have more experience in the government arena and then attempting to structure within the limitations rather than demanding based on assumptions.

Keep in mind that everyone in that room has an agenda influenced by their personal experiences, desires and temperament and sometimes what seems to be obvious common ground has just enough of a twist that people butt heads rather than finding consensus and efficiency. That is the nature of committees composed of human beings.

I realize this is philosophical in nature, but true none the less - ask yourself what's in it for the other person and how do we get there?

 

Kelly, having been active for many years and participated in many CFSAC meetings (and led other activites), I ask you: what have all those philosophical excuses obtained for us? I used to believe as you do; I have learned now that we have to take the reigns like other advocacy groups have done. I hope you will re-read the ideas and suggest how we can accomplish them, not how we can't.

 

Kelly, having been active for many years and participated in many CFSAC meetings (and led other activites), I ask you: what have all those philosophical excuses obtained for us? I used to believe as you do; I have learned now that we have to take the reigns like other advocacy groups have done. I hope you will re-read the ideas and suggest how we can accomplish them, not how we can't.

Most of what I wrote was explanatory in nature - facts are just facts. But, that probably didn't make them seem any less negative. Although I've not attended all that many CFSAC meetings, due to the nature of my work I've covered what seems like a billion govt. meetings at all levels and they are all much the same. Today is a very hectic day like most, but I will give this some serious thought and get back.

 

i really think the next step in our ME/CFS struggle is getting people to go to Sebelius, Collins and Fauci's public talks and having die-ins and lie-ins. the media will already be there. perfect. let's use them!

these public protests will attack the "nice" public image of the NIH ("gasp! the NIH is letting people die and remain bedridden for decades!!!???") and thus will motivate the NIH to act faster on our behalf.

this is what ACT UP did, and time we did it too. finally time we did it too.

but like everyone already said, it is hard to get bedridden sick people out into the streets (or NIH public talks).

so for now, we need to make noise the way we CAN make noise: emailing, calling, faxing and video campaigns. we have found that these are proven methods for obtaining change.

 

I agree entirely that we need to emulate the tactics that worked, particularly since we know that hundreds of thousands of letters didn't convince the CDC of a thing. You made me think: I wonder if Sibelius/Collins/Fauci have ever seen a sick ME patient. Think about the government officials who have attended the ME/CFSAC meetings; from a distance they may have thought that the patients looked pretty healthy, and they certainly were creative and almost eloquent. Twenty years ago we used to lie on the floor in the back of the doctors' meetings (of course, Hennessey brought his pillow and blanket and laid down in front of the center aisle!). Then we got smart and requested tables on which to lie. I haven't seen that in the last 2 ME/CFSAC meetings. (Watching the mother with the two teenage boys sitting there all that time made me cry.) We also requested an extra room next door for those who needed to lie down in darkness and quiet for a break. Recliners would be nice, too, now that we know why patients can't remain upright for long. Those of us too proud to use wheelchairs relinquished our pride for the occasion, if only to line the wheelchairs up outside the room. Let's request those accommodations for our handicap from now on. Let's require that the microphones be brought to us, too, when we are in a meeting where we would have to stand in line to make a comment. A few tables might be more effective than a roomful of "healthy looking" patients, which we aren't going to get anyway. The brave patients who live near Washington have been to so many meetings, and anyone who has done it at their peril knows the cost. But one time might be worth it; you feel good for doing your part and you also gain an understanding of what a government meeting is like. So if people could make the trip, maybe some would consider it.

Here is a list of other projects: http://www.cfsuntied.com/blog2/ . If each person participated in just one....