The next CFSAC meeting, which was supposed to be held earlier this month, but got postponed to December, brings with it so many changes that one has to wonder: Is this the beginning of the end for CFSAC, maybe not an all-bad outcome? For years, the consensus has been—due to the ineffectiveness of the committee and the recent change in tone and infantilizing treatment of “inconvenient” committee members—that this committee has served no other purpose than to build a record for judgment day. But that’s an expensive record at about $230,000 of taxpayer money yearly.
The most concerning change is the format of the meeting. It went from being two full days of in-person meetings with an unlimited number of people able to watch on their computers at home to two half-day web meetings. People can “attend” either via phone or via the Internet. The web meeting, allowing people to watch the video-comment submissions, is limited to 500 web participants. When I say “web,” I really mean mostly audio, because “there will be no live video,” just some video comments from patients. According to Dr. Leonard Jason’s research, there are nearly 1 million Americans afflicted with this disease. So, only 0.05% of the patient population is allowed to participate in the “webinar.” Restricting the number of participants that much, does that even still qualify as a public meeting, as is required by federal law?
Here is the official reason we were given via the CFSAC listserv on September 12, 2013 for holding a web meeting instead of an in-person meeting: “Because of budget constraints and the government-wide Sequestration, federal advisory committees have been told to conduct at least some of their meetings as webinars or use other similar formats.” Ok, so it’s a financial issue. Ok, maybe. But even if other advisory committees have substituted their in-person meetings with webinars—something I would be extremely interested to hear about—whoever thought of saving money at this particular meeting at this pivotal time of this disease, which costs the taxpayer billions every year, seems to have either really bad judgment, no respect for patients or an agenda that we all can speculate about. Or maybe all of the above.
First off, at the last meeting, two brave committee members, Eileen Holderman and Dr. Mary Ann Fletcher stated on the record that they have been intimidated by the designated federal official, Dr. Nancy Lee, a very serious charge. An official investigation into the matter is under way. These charges were brought to light in the middle of the discussion of the case definition, which is at the center of the crucial IOM debate now. One can’t help but think that Dr. Lee’s trying to avoid another encounter with Eileen played a role in holding this particular meeting via the Internet. Eileen’s term is up in May of next year. This is her last CFSAC meeting as a committee member. It seems highly unlikely that this is a coincidence.
Secondly, and in the big scheme of things, more importantly, the IOM/HHS-contract issue—arguably the most important issue this disease population has ever faced— has been reaching its climax. Patients are as involved in the politics surrounding this disease as they have ever been. Am I the only one who feels that this was a convenient time to squash any potential big patient demonstrations surrounding an in-person meeting?
And why the change from two full-day to two half-day meetings? Clearly it’s not cost. There would be no significant additional costs associated with having a few more hours of web meeting on both days. Right at the time when so many patients have so much to say about the IOM contract, an issue, which by the way, got allotted a whooping 30 minutes on the agenda. These 30 minutes, by the way, are assigned to Dr. Lee alone; no committee-member discussion is planned, which is unfathomable given the likely grave outcome of the IOM Contract if not stopped. There is not even an attempt to pretend anymore, it seems.
The other big change seems to be the way of submitting public comments. In the past, one could submit written comments and still comment either via phone or in person. Now, when you go to the registration website, you get three choices in the pull-down menu to deliver public comments: by phone, in writing or via pre-recorded video (video instead of in-person due to the meeting being held over the web). It seems that there is no option of submitting written comments in addition to phone or video comments. This not insignificant change is disguised with the following comment: “You are no longer required to submit a written copy of your testimony as in past years unless you wish to have it included in the public record.” But what if I want to provide written comments in addition to phone or video comments?! After all, comments delivered over the phone do not become part of the official record of the meeting. Is this really an oversight?
Let’s give the government the benefit of the doubt for a second and assume that this is just a website-design error and the outcome was unintentional. How do we find out? Well, not from CFSAC: “[T]he CFSAC mailbox will not respond to questions about specific public comment requests. These requests and/or inquiries should be directed to CFSACDec2013@seamoncorporation.com.” That is exactly what I did. I sent an email to Seamon Corporation asking if this is an intentional change and if so, what the reasoning is. I am not holding my breath for a reply. For one thing, Seamon Corporation is unlikely to be privy to, or free to talk about, government policy as it relates to its advisory committees. But CFSAC itself will not answer any questions regarding public comments, just like Dr. Lee (CFSAC DFO) and Dr. Marschall (CFSAC Chair) never replied to my email inquiring about the authorship of the IOM FAQs. It’s a catch 22. That’s why I am bringing it up here.
Now, about the written or video comments. They are due this coming Friday, November 29, 2013, a day after Thanksgiving! Patients keep stressing how hard the holidays are for them—getting ready for them and recovering from them—due to this crippling disease. I guess HHS hasn’t listened to our narratives for the past 10 years, as we painstakingly described the hardships of even the pleasures of life, such as the holidays.
The other paradox is that people who submit a video or who wish to give comments over the phone will not be notified before December 4, 2013 whether they will get accommodated. Unfortunately, that is five days after the deadline for written comments. So, if your preference is to give comments over the phone or by video—as is mine—but you are concerned about receiving a time slot—as am I—you really have no other choice but to settle for written comments when you register—as did I. For the record, I would strongly prefer to provide written comments AND comments via phone or video, but I am NOT given that option by the registration website. And just like that, another way for patients to voice their opinions and concerns has been stripped from us without as much as the hint of an explanation.
Thoughts About M.E. 
Wellll, the plot sure does thicken, doesn’t it!! DISrespectful all the way around. Indeed, the timing of the written replies–realllly–Thanksgiving in the USA–this is NO coincidence–this is more ‘strategic planning’ and ‘hidden’ yet ‘transparent’ agendas. I wonder if one can ‘double’ register–if one can only tick one box–can one simply call up the registry link again–to acquire two choices that normally would have been one?? (sounds like it is worth a try; but the system probably effectively blocks that–and maybe even goes so far as to have one registration cancelling out the other).
I have been working on my written comments throughout the day and I am done in too. More reading and proofreading to do on the five pages–speaking LOUD and speaking CLEAR.
I just have a feeling that something is going to blow sky high in all of this–exposing dasterdly deeds and people being taken to ‘task’ on their individual and collective abhorrent behaviours! Let’s hope so!!!
Your observant points are well taken, Jeannette, including the change in the length of meeting times–two full days to two one-half days–stated intimidation by Dr. Nancy Lee of two committee members. Are ‘the powers that be’ running scared because of the ‘vocalizations’–being taken to task and called on behaviours ?? THE TIME HAS COME AND THAT IS FOR SURE–they OUGHT TO BE EXPECTING THIS–I guess they are and that is why we seen them ‘running scared’ and putting UP even MORE barriers/blockades!!! DISgraceful!
i thought about the double-registering and actually did that to change my choice, but the problem is that even if we send emails to Seamon letting them know what we did, it might take away slots from folks to participate in the webinar.
i definitely agree: this is a defensive move on their part. they could not risk a real meeting right now. too risky that things might get out of hand and we might get some media coverage of activities around the meeting.
They seem to be boxing us into the corner because we are such pests. SHeeeeeesh!
that’s exactly how they look at us: as a pest.
I looked into some of the other advisory committees under Dr. Koh. As far as I could tell, all of them continued with their in person meetings this fall. If there is some sort of Department-wide move to webinar meetings, I have not found evidence of it.
Regarding written comments, my reading of the procedures for this meeting is that written comments are permitted, regardless of whether the person signs up for a phone or video slot. The meeting instructions say: “Individuals wishing to submit written comment for public record should include it with their registration form or send an electronic copy of their testimony in advance to: CFSACDec2013@seamoncorporation.com no later than Friday, November 29, 2013.” https://www.blsmeetings.net/CFSACdec2013/publicComments.cfm?
In the past, I have submitted a written version (which can be 5 single space pages long) that differed from the version I delivered over the phone. I have always been concerned that requiring written comments before slots are assigned creates the impression that comments are screened. It’s patently ridiculous, and some advocates have tried to convince Dr. Lee of that – and failed. The only concession we won was that written comments are no longer required. The problem is, if you want to be on the record then written comments are required for that – which puts us back where we started.
jennie, thanks for chiming in. i knew that if anybody knew the answer to whether other HHS advisory committees changed to the web format it would be you. and, sadly, i can’t say i am surprised by what you found.
maybe my reading of the written-comments option is the lawyer in the me running away with me (and having a different lawyer reading it differently might be a good reality check). but if a drop-down menu gives me only one out of three options, then i take that to mean that i cannot choose two of those options. So, my strong sense is that they might be trying to discourage us from submitting something in writing (because they don’t want scalding comments on the record) by putting out suggestive instructions, but might not actually refuse to accept the written comments even if one signs up for video or phone testimony. Maybe it’s just incompetence of whoever drafted that instructions and the site. Maybe it’s by design.
The problem is that they get to pick and choose what they want. Say you register for phone comments and submit written comments, too. They may interpret that to mean that the sign-up for phone comments trumps/preempts the sign-up for written comments and therefore refuse to enter the written testimony into the record. Then, when it comes time to decide who gets a phone slot, you happen not to be picked. All of a sudden, you’ve got nothing. And no remedy whatsoever since they are making the rules and never did say that you could do both. Still, I may try that. The problem of having to submit the written stuff before they let you know whether they pick you for phone comments remains, as you say. You can bet that they screen the written comments before deciding who gets to speak.
My experience with CFSAC at the last meeting, where they basically tried to deny me a speaking slot after they had confirmed it, makes it hard for me to give the benefit of the doubt. and their confirmation email still does not confirm what type of comment you are signed up for. so, they can just claim you made a mistake in the registration process, as they did with me in may.
You are absolutely right about the way they drafted the rules. It’s terrible. I don’t know if it is by design or not, but the same was true of the instructions for nominating new members. There were differences between the Fed Reg notice and the CFSAC listserv announcements for that. The instructions are never clear.
When the meeting registration first opened, I signed up for a phone comment slot. The form REQUIRED me to attach my written comments in order to register! I wound up submitting a dummy document as a placeholder. They did fix the registration to make that attachment optional after several of us complained.
You are not the only person who has had their comment registration screwed up. It’s been happening for awhile. They pay all this money for a contractor (to save staff the time and trouble) and the contractor does a terrible job.
This isn’t rocket science. I have no idea why they can’t do it properly, but it certainly does nothing to inspire confidence.
“This isn’t rocket science.”
That says it all!
PS: I would love to hear back from CFSAC (through Seaomon or otherwise) that both written comments AND video or phone comments are possible.
Good point! All I can say is that this has always been permitted in the past. If I hear anything definitive I will let you know.
I think the language is pretty clear that you can submit both, but then again, as you say, that doesn’t mean they won’t pull some illogic to deny our voices one way or another.
More fishiness, as you guys point out, the other advisory committees have no change, the timing is suspect, shortening to half the time, when this will save a relatively insignificant amount of money and the only thing on IoM is a talk by Nancy Lee. These last two are TOTALLY outrageous!
I suggest we all ask CFSAC to explicitly condemn the IoM contract and once again call for immediate adoption of CCC!
the registration process is not “pretty clear.” that’s my whole point, justin.
I’m feeling defeated, but that’s what they are hoping for, however we are on the precipice of something great. I think we need to bring a few things to the forefront that are not being used.
1. 75% of ME/CFS suffers are WOMEN. War on Women? Over 50% of us are Head of Households, if this disease afflicted men on that level they would have done something years ago. This needs to be highlighted! Hello PINK!!
2. The DENIED second day stress that proves metabolic FAILURE, pure NEGLIGENCE. This test shows on paper, metabolic failure that a Doctor can read, and understand. While it doesn’t “Treat” it’s undeniable proof of a test that CANNOT be faked, by the patients.
3. Immunizations. How many of us had ANY kind of immunizations?
This was the year I had planned on going to a meeting, since thats off I do need to sign up to participate. Do I go to the cfsac website to do so?
it is very demoralizing, especially when you read jennie’s comment that no other HHS advisory committee changed to the web format.
here is the link to the registration site: https://www.blsmeetings.net/CFSACdec2013/index.cfm?
here is the federal-register notice with more information: https://www.federalregister.gov/articles/2013/11/21/2013-27926/meeting-of-the-chronic-fatigue-syndrome-advisory-committee
Jeannette, isn’t there any legal maneuver open to us to block the CFSAC meeting on grounds that it is less than the other AC committee meetings and this is in violation of the law and our rights? I’d like to see it blocked. Better a full normal meeting January 15th than a crucifixion December 4 and 4.
i honestly don’t know deborah. i will give it some thought, but i’ve pushed so hard the last couple of months, i am *this* close to crashing. so, not sure how much good i’ll be if i have to sustain this insane pace.
i hear you totally though.
another thought would be a total boycott of the meeting. i doubt it’ll work b/c it would only be effective if really nobody submitted anything or logged on to the webinar. but that’s probably impossible to achieve. and even then, the meeting would still happen and they could act as if nothing was wrong. but i do think it’s worth considering.
Jeannette, thank you for all you do. I signed up for the phone in testimony for the CFSAC meeting, today is the 4th, and I haven’t heard from them yet, does that mean I wasn’t chosen? Thank you.
Walking,
I agree we need to fight for the CPET, but its not negligence, its more intentional actions to bury us.
It might be a good idea to appeal to NOW or women’s health organizations to help us bc the discrimination against this disease is probably partly sexism.
i agree with justin: it’s by design. this is THE biomarker for us. and they are not allowing it. there is no innocent explanation. they ones that were given are disingenuous.
Yes, this is demoralizing and reeks of more government duplicitousness. Whether you realize it our not, you, Jeanette, and Jennifer Brea are mobilizing a worldwide movement to put government to task and also destigmatize M.E. I feel that it’s to our advantage – critical, in fact – to harness and focus this movement via a march on Washington a.k.a. Act Up! did with HIV/AIDS. Everyone laments that that patient population couldn’t physically do this, and that is valid. But why can’t each of us send a caretaker, friend, relative or representative to march for us? I’m sure that is what happend with Act Up! If each of us sends at least one person then we WILL make a statement and the media is bound to cover it. What do you, fellow sufferers, think of this as a goal for 2014?
thank you, pam!
i totally agree: the tide is turning and it’s scaring them. this is our high noon. they are going all out trying to suppress us for good with the IOM contract. and we are holding firm, sick as we are. because we understand the significance of the moment. jen’s movie will rock the world. i know it. she has so much talent and determination.
re the march on washington: it is a daunting task. i really like your idea of sending our healthy folks. many of us do not have any supporters. others have several. my husband would go in a heartbeat and i could probably mobilize a few other people to go for me. in my own case, if ampligen keeps doing its magic (and i can stop losing ground from doing advocacy), i might be able to go myself even. i know there are other patients (not many though) who would be able to pull it off.
so, in short: i like it! maybe let’s do in conjunction with the next “real” CFSAC meeting if there will be another one. that would be probably in june (tough weather in DC that time of the year though).
what do others think?
I think a June rally in D.C. timed with the next CFSAC meeting is an AMAZING idea, Jeanette! Perhaps we can put out feelers to the community via Jen’s site as well? I am willing to help organize. I think it’s important we work with partners on this above and beyond patient and advocacy groups so we are taken seriously: Research experts (critical), women’s groups, perhaps even drug companies (Ampligen, Lyrica manufacturers?), even a commercial sponsor who could help us extend our reach and defray any costs (a wellness/healthy lifestyle product or organization – we would definitely need to work our group’s connections for this). We definitely have the social organizing power for this. Let’s DO IT!!!
i love your enthusiasm, Pam!
i am having one of those days and can’t must much of it. but that’ll change. thanks for putting this thought out there.
(ps: i am still not totally sold on june just b/c of the weather. and really, who cares about CFSAC anymore? maybe we should shoot for a time that i easier on patients weather-wise, like september? or the spring.)
Jeannette, I think we need a legal maneuver. This is not a valid CFSAC meeting and clearly diminished from what other ACs are doing. And by the way, it is interfering with my religious freedom, as December 4th is the first day of Hanukkah (like all Jewish holidays it starts the night before after sunset.) We need a lawyer to draft an injunction to this meeting as not a proper meeting and reschedule it in January as a proper full two day meeting with live people. People just don’t engage in webbie-only meetings; I can find some literature on that.
Deborah, the meeting is on the 10th and 11th.
i can’t promise anything. like i said, i am quite at the end of my rope right now. but i will think about it. not sure that spending energy on CFSAC is the best use of our resources. i think that the IOM contract should be our focus. and CFSAC may be a good opportunity to be extremely clear about our opposition to the contract. even if it’s only a webinar. in a way, these meetings are always useless. even the in-person ones.
having said that, if you can pull up the literature on webinars that you mentioned, i would be interested in seeing that. maybe it will inspire me.
You have been doing so much, Jeannette, with all these submissions–it ALL takes SO MUCH effort, as we well know. Please take gooood care of you!
BTW, I am generally in favor of web conferencing to save money for our government, but do they really need to take out the video and the shortening to half the time is unacceptable.
Thanks to Jennie for pointing out that phone in and video (and in-person?) comments aren’t on the record, only written ones are.
so, how do you envision a video webcast with about 20 or so committee and ex officio members? it would be utter chaos and i am predicting chaos even with the audio-only version.
I didn’t realize CFSAC cost $230,000 for two meetings a year. Sounds like quite a lot. Does it really take 1.5 man-years in staff time? I am in favor of keeping CFSAC, but actually maybe real web-conferencing with video and two full days would be a good idea.
Regardless, they really should allow video submissions at every meeting!
Sorry to repeat myself, but I strongly suggest we all focus exclusively on demanding CFSAC denounce in the strongest terms the IoM contract and adopt CCC. If we all speak with one voice, I think there’s a very good chance that CFSAC with adopt such a ‘suggestion.’
Now I am noticing, that, yes, even in-person comments (i.e. at an in-person meeting not a webcast) are not part of the record, only written comments! That’s pretty bad, and they don’t really make that clear, at least this is the first Im hearing of it.
And isn’t THAT absolutely RIDICULOUS how CFSAC has FRAMED this–in-person comments are NOT part of the record–more CONcrete evidence of MORE and ‘ongoing’ ROADBLOCKS . . . at every turn. Let’s keep a sharp eye out to confirm that our written comments ARE part of the permanent record!!!
HERE’s the thing–we KEEP talking LOUD and CLEAR; we do NOT give up–that is not an option — And another thing for anyone out there reading this blog–ME/CFS knows NO boundaries — there is NOwhere to run from with ME/CFS–and what will ‘the powers that be’ do when ME/CFS strikes in, or close to, ‘their’ home / ‘their’ near and dear ones–themselves or their family/ies–stealing ‘their’ lives away–either this generation or the next . . . (Their) SMUGNESS and ARROGANCE won’t feel so good then. This scenario IS coming because their NEGLIGENCE and ARROGANCE has allowed this global spread of the debilitating biological disease of ME/CFS. In a modern ‘humane’ world??!!!–something terribly WRONG, terribly terribly WRONG here.
Huffington Post has recently posted this:
http://www.americanbankingnews.com/2013/11/20/incorrect-government-information-could-be-hurting-chronic-fatigue-sydrome-patients-new-research-finds/#comments
Perhaps the Huffington reporter is interested in follow-up articles . . .
I am going to keep working on my five-page written comments to CFSAC and try to get it in BEFORE the 29th–just in case some questionable mysterious ‘technical difficulties’ arise . Good reminder of some points to include, Justin; and, yes, ‘more INTENTIONAL actions to bury us’–there can be NO question as to that. There is NO benefit of the doubt to be given ‘for all of THIS’ when seriously ILL people are being oppressed and bullied at every step of the way by these ‘powers that be’. We are NOT fools!! Yes, Walking Dead, 2nd day stress/exercise test DENIED–pure ‘PURPOSEFUL’ NEGLIGENCE. MANY males age speaking up and giving visible faces / voices to ME/CFS on behalf of their gender AND all of us; I think I will include that point as well . . . in my written comments!
There is no more important time than NOW to keep talking and standing up, not only for ourselves, but for the others who have lost their support and their voices, AND for the young children and teens–who will never get to live many wondrous life experiences—and the millions that will follow us ‘LOCKED into’ this horrid debilitating disease of ME/CFS–our lives stolen away.
“There is no more important time than NOW to keep talking and standing up, not only for ourselves, but for the others who have lost their support and their voices, AND for the young children and teens–who will never get to live many wondrous life experiences—and the millions that will follow us ‘LOCKED into’ this horrid debilitating disease of ME/CFS–our lives stolen away.”
I agree. It’s now or never. If we don’t fight now, it’s all over.
The sick children are the saddest part of it all. I just got an email yesterday from a mom who is sick with ME and thinks that her 6-year old daughter now has it, too. These stories rip your heart out.
Ohhh, boy–sad, sad, devastating story about the mother and child with ME 😦 You know, THAT IS EXACTLY WHY the EXPERTS AND RESEARCHERS ARE STANDING UP AND SPEAKING UP—BECAUSE THEY K N O W EXACTLY THAT–that ME/CFS is a CRISIS that is spreading–it knows no age or gender boundaries!!!
P.S. I am sure that you can figure out that MANY males ‘are’ speaking up–thanks for bearing with me. Actually–what I’ve come to learn in human behaviour — is that at some point we can actually thank people, such as ‘the powers’ that be in this case–for continuing to ‘genuinely be’ (behaving) as to EXACTLY who they are/what they stand for. WHY (thank them?)–because, ultimately, it is more evidence as to EXPOSING THEMSELVES as to their NOT-SO-HIDDEN agendas.
We are at a PIVOTAL time–remember THE EXPERTS AND RESEARCHERS AND ALL THE ADVOCATES going to bat for us speaking up to HHS re the IOM contract–followed by Jennifer Brea’s vision of the docu-feature film CANARY IN A COAL MINE.
Just as the roadblocks continue to be put up by the ‘powers that be’–so too does the most important work of the EXPERTS and RESEARCHERS in getting to the answers to ME/CFS !!! 🙂
haha, Ess. you crack me up. you are right that guys are less likely to take us seriously. and maybe more importantly, to speak up when they are stricken themselves. the people who stay in the closet, while i understand their reasons usually, do hurt us. and it’s harder for guys to admit that they are “chronically fatigued.”
i think the evidence of what’s been going on has been building for so long. we’ve been good at building that record. whether or not anybody is actually going to have to answer for what they’ve been doing is an open question. look at strauss. look at reeves. they were never held accountable. however, these things have a life of their own and it sometimes doesn’t take much for the tide to turn. jen’s film will be one of those game changers. and hopefully dr. lipkin.
Forget spending your energy on the long speeches and show up with picket signs for the meeting anyway.
We should not accept this change in our 2 day meetings, if we let them do this now, we will never get it back. I don’t know how to link to set something up, but we need to hit them hard, and demand our time (What little we get). The last thing we need is less recognition. I hope that the documentary shows the government meetings being taken away from this group of very ill people, including children. This decrease of our meetings isn’t about saving money it’s about the decrease of the ME/CFS community. WE CANNOT ACCEPT THIS!!!!
I strongly endorse the “march” on Washington. Worked for King, worked for Kerry. Only we need to make it a ROLL on Washington with patients and stand-ins in wheel chairs and on gurneys being pushed around the demonstration. Two points:
oPolice will be slower to storm a bunch of cripples with wheelchairs and gurneys.
oWe will look a lot BIGGER as a demonstration with all the equipment.
We can fill in missing manpower on both the roll and push fronts not only with our families and friends but also “occupy” folk, students from the huge DC student populations, etc. Also we should have an unarmed guard of Gulf War veterans in uniforms flanking us to make it look really big. They need to be with us and we need to be with them. Perhaps we can come up with some appropriate new march chants for them.
Perhaps our HIV AIDS brothers and sisters want to join in for ‘the cause’ too . . .
Money is just a convenient excuse–you are right, Walking Dead–and that is exactly what it feels like to have this horrid disease called ME/CFS–we are The Walking Dead. MORE of ‘the same AGENDA’ AGAINST the science and truths of ME/CFS; ‘they’ are turning up the volume–just as the science with the biological truths of ME/CFS is getting EVER LOUDER and EVER STRONGER!!! NO coincidence–science is proving the BIOLOGICAL FACTS about ME/CFS–the ‘bad guys’ are trying their darndest to BURY the science, and us.
THE Bad Guys are NOT going to win!!!
Have a peek at this site AND
Feel validated in our comments to the CFSAC–see the link with info re Dr. Sir Simon Wesseley. In human behaviour, oft times the NUT will call the other/s NUTS to deflect from themselves; I read anger issues and tantrum-like behaviour too.
http://www.cfstreatmentguide.com/1/post/2013/11/sir-wessely-rides-again.html
Interesting info here too re GULF WAR SYNDROME — recent scientific proof as to the BIOLOGICAL roots of the disease (as recent as 2012 and 2013)–and then along came the ‘burying agency’ — IOM. Criminal work going on . . . !!!! That deserves some JUSTICE!!!
Thanks for doing all this. I think that the government is dealing with the ME/CFS community as “pests,” and wants to minimize our voices and push them under the carpet, so to speak. Money is an excuse, although with the sequestration cuts, a lot of medical research and other programs are being cut way back because there are real funding cutbacks.
Government agencies programs and staffs are being cut back under sequestration in all sorts of key areas, including inspections of food production facilities, monitoring of food-borne illnesses, etc.
However, this is political and financial. The government does not want to recognize this disease as it should do because it would legitimatize it, and it would have to foot the bill for more research, medical care and disability payments. At this point, the government is moving to curtail this in general, and with ME/CFS in particular.
I’m so glad that this eminent blogger and others are keeping up the fight and pushing hard.
I wish we could go to D.C. I totally wholeheartedly loved what ACT-UP did, including sit-ins, lie-ins, other civil disobedience, as well as demonstrations and picket lines. Even informational picketing helps; one hands out educational materials.
What I’m wondering is if Jeannette (or anyone else) can get the ear of a sympathetic journalist who could write this up and have it printed. I remember David Tuller (Tulley? whatever) wrote some articles. Llewellyn King has done several sympathetic programs and videos. Could he help? Could we pester some media? Send them some information? Write a press release and get it out to major media about this? It could be emailed. Then phone calls.
This isn’t exactly the Pentagon Papers, but it is important to expose and we need media coverage.
MEDIA–great idea–in an earlier post–November 20, 2013, I wrote:
Just saw on CNN a report about US veterans dying due to diagnosis delays or treatments delays @ US Veterans hospitals. A US congressman was involved–allocating more funds to help the
backlog–ONLY 1/3 of the $million + was used for this–backlogs got longer in a matter of only a few months–Veterans dying.
Drew Griffin was the reporter on this–hosted by Wolf Blitzer (November 19, 2013).
A parting word with this program–in general–if you ‘we’ have anything to report/investigate–contact cnn.com/investigations or Drew Griffin.
Would this be a way / one way to go–CNN loves to investigate and they ARE GOOOOD!!
To the cutbacks–isn’t that $160 million spent on baldness . . . Ummmm—-I think being WELL and able to live life instead of being housebound on disability with ME/CFS trumps hair loss–young lives being stolen to ME/CFS realllly puts this into context too!!
Look, you won’t change the CFSAC meetings they are a pointless waste of time and always have been. Instead, why don’t we all try using our very limited energy and raise some money for Rituximab trials such as the Norwegian trial and the UK Rituximab study proposed by Invest in ME – http://www.ukrituximabtrial.org/
Better still, let’s get a proper large scale Rituximab trial started in the US.
When I see the amount of money, time, and energy that are being wasted by ME patients on the CFSAC it makes me despair that the same amount of energy could have really changed things and brought some hope for people with ME/CFS. Proof is the only thing that will change attitudes to ME/CFS and proof requires medical trials.
Interesting idea.
Speaking up in any way we can, although it does require a definite PUSH and EFFORT with the little energy available, is of value–it is EVIDENCE of our strong OPPOSITION to being buried alive in this fiasco.