Next Monday, the IOM Panel creating new diagnostic criteria for ME/CFS will hold a public meeting. This may or may not be the only public meeting for the study, and it will be webcast. As you can see, I am one of seven advocates on the agenda at the invitation of the IOM. Contrary to what some people may think, I believe it would have been wrong to decline the invitation.
Image credits: suzannegaudetbenefit
I don’t know how the IOM selected the people and organizations to speak at the meeting. IOM staff would not release a list of the people invited, just the final list of seven who accepted. They may have invited others, although I haven’t heard anything about it through the grapevine.
There’s been some grumbling about it, including whether we were selected because of the positions we’ve taken on the IOM contract or because of what IOM thought we would say. Honestly, I have no idea. I received the invitation and immediately accepted. Some might think this makes me a sell-out, or that some or all of us should have declined.
In my personal opinion, that’s bogus.
I see this through the lens of my legal training. When the Supreme Court invites you to present oral argument, you don’t refuse to show up because you don’t like Justice So-and-So’s politics. Your role is to show up and present the best argument you can, whether or not you believe that you will win.
Like it or not, the IOM study is happening. None of us can predict the future: maybe the contract will be rescinded, or maybe not. But as of right now, the IOM is in the process of creating new diagnostic criteria for ME/CFS. Why on earth should I refuse an invitation to tell them what I think about that?
A fellow advocate commented to me last week that refusing this opportunity to provide input is a bit like refusing to vote and then complaining about the government. I don’t know if IOM will get it right; I can’t even assess the odds of that happening. But I do know that if we refuse to speak or if we withhold our input, then we place a very heavy burden on the ME/CFS experts on the panel to make all these arguments for us. If we refuse to speak out, then we make it easier for the panel to come up with the wrong answer. I have no delusions about whether anything we say will alter the entire course of the study. But I do know that if we say nothing at all, we are playing right into the hands of those who think we’re not “qualified” enough to be worth listening to.
I know there are people who would prefer not to deal with ME/CFS patients. There are people who think patients don’t know enough to speak on scientific or medical questions. I think it likely that there are people who would prefer for us not to show up at all. Fortunately, I have not encountered that attitude among the IOM staff members. Whether any of the panelists feel that way is anybody’s guess. But I’ve always been the kind of person who speaks her mind, even when some people wish I wouldn’t.
There are advocates missing from the list of speakers who I wish had received invitations. Fortunately, at least a few of them have three-minute slots in the last session of the day. The IOM panel needs to hear directly from these advocates, and I’m grateful that they are willing to speak – especially because of the physical and financial costs of attending the meeting in person. For me personally, I am putting my health at risk to attend in person, but I believe there is enough on the line to make it worth the sacrifice.
Anyone can submit written comments to the IOM panel, and I hope that many people will. Instructions are below. Before you dismiss this opportunity, consider this: do you believe anyone will speak for us if we refuse to speak for ourselves?
If you would like to submit written comments for the first meeting, please use the email (mecfsopensession@nas.edu). Please focus your comments on the following question: “What is the most important aspect or information that this committee should consider throughout the course of the study?” Written comments received by January 22, 2014 will be distributed to the committee before the meeting on January 27. After January 27, written comments should be sent to the project email address (mecfs@nas.edu). All comments will be considered by the committee, but they may be distributed after the meeting is adjourned.
Yes, Jennifer, I do think it is odd that you are the only “advocate” invited to speak at this IOM meeting who will not be representing an organization.
Yes, Jennifer, I do think it is odd that the IOM asked you to speak there, since you are a former Chairman of the CAA Board and active member for many years and retain your friendships with those in power at the CAA, and CAA has endorsed the IOM contract.
Yes, Jennifer, I do think it is odd that the IOM asked you to speak there, while asking the Phoenix Rising Forum to present and giving it an “advocates” slot, while they obviously did not have room to ask MECFSForums to speak, yet they had room to invite the writer of a blog to speak on behalf of her blog.
Of course, the, vote in MECFSForums’ poll on the IOM contract is, at present, 100 percent against the IOM contract, and I, one of MECFSForums’ administrators, created a Petition to Stop the HHS-IOM Contract and Accept the CCC Definition of ME/CFS which now has more than 3500 signatures.
Of course, you did assist the IOM in gaining participation by large numbers of ME/CFS patients through your blog and your postings on Phoenix Rising. Yes, I find the fact that you were invited as one of the “advocates” odd. Could it be because they know that I, and MECFSForums are wholeheartedly opposed to this disastrous contract, while you have helped them gain patient participation so they can claim that patients have been part of this process?
Patricia, I can’t speak to why you were or were not invited by IOM. But I do think you should have been because your perspective is just as important as mine or anyone else’s.
Jennie, I am happy that you will be given the chance to speak–I think your comments get it just right–you don’t know why you were chosen, and others rejected, but you have a chance to say something useful and informed, and I am glad you will be there for us. I just hope that it does not precipitate a major crash! Best wishes and good luck, Chris
Jennie, who are the other six who have been invited to speak?
I agree, as much as I am opposed to this contract, that we must make our positions known. I am writing and sending my comments, as I can put more into written comments than I could if I had a speaking slot. Three minutes is barely two pages of text.
Billie
The agenda lists the other advocacy speakers as:
Lori Chapo-Kroger, PANDORA Org
Mary Schweitzer, Wisconsin ME/CFS Association, Inc.
Carol Head, CFIDS Association of America
Pat LaRosa, New Jersey Chronic Fatigue Syndrome Association, Inc.
Adin Burroughs, Phoenix Rising
Charmian Proskauer, Massachusetts CFIDS/ME & FM Association
Thank you, Jennie, for doing this. I know you will give valuable input to the committee and represent well the concerns of the patient community. Your commitment is greatly appreciated.
Many thanks to Jennie and the rest of the presenters who are willing to work so hard and at such great personal risk and financial cost to present at the meeting. We also have members on the panel who have worked tirelessly in our behalf for years and I agree that we need to give them all the support that we can.
At this point we have no idea why those who are speaking were asked, or if there were others that refused that haven’t come forward, but why would IOM bother asking groups or individuals who have adamantly and publicly declared that they would not participate? And then why would those people feel upset or surprised they weren’t asked, or see some sort of conspiracy there?
I have issues with advocates who declare that the ENTIRE patient population is against this contract. I for one think that it could have a positive outcome. You can bet that I won’t be posting this on certain forums where I will be flamed, accused of being naive, or have my character attacked. The amount of vitriol is astounding, and personal attacks or threats can not be considered in any way constructive criticism or respectful disagreement.
I think it would be safe to say that there are people in our government that are negatively biased against ME/CFS that will be working against us. I think we should also acknowledged that there are government workers that have good intentions and genuinely want to help us, although some of those efforts may have been extremely inept or ill informed. I think it would be very short-sighted not to reach out to those who are sympathetic as well as oppose those who aren’t. This makes it imperative that we get as much transparency as possible. Thanks to Jennie and any others who give so much of their limited health and energy to make this happen.
May they be blessed with the sunshine of another FOIA.
“… why would IOM bother asking groups or individuals who have adamantly and publicly declared that they would not participate? And then why would those people feel upset or surprised they weren’t asked, or see some sort of conspiracy there?”
Darlene, I don’t know. Maybe because the right thing to do would have been to have all opinions represented. I am not saying all patients are against this “study,” but a fair amount are. Probably the majority of ppl who stayed on top of the issue. Not to invite anybody from that part of the community speaks volumes.
And I am not upset I wasn’t invited. I would have declined in any event. But I find this very helpful in assessing the legitimacy of the process. That and the fact that there is zero transparency re the selection process.
Do you honestly think that it’s ok to cut out dissenting opinions?
Jeannette, am I correct that you will speak during the public comment session? I would have preferred for you to have 7 minutes, but I’m glad you’ll have 3 during the last session.
I agree that ME CFS Forums should have been offered an invited speaking spot at the meeting. It is very unfortunate and rather peculiar that they were not.
As for the people who were invited to speak, I would imagine that the reaction of this community toward their participation will be influenced much more strongly by exactly what they choose to say than by their mere acceptance of the invitation.
I was interested to see that Phoenix Rising is planning to focus their own presentation on the community opposition to the IOM involvement and on the desirability of adoption of the CCC in its present form. Mark’s comments on the first page of this thread seem to me appropriate — hopefully (subsequent to seven pages of discussion) they will not end up being changed much.
http://forums.phoenixrising.me/index.php?threads/what-should-phoenix-rising-tell-the-iom-committee.27457/
Explanations of exactly why it would be a good idea to adopt the CCC in its current form rather than having the committee create something new also would seem to be appropriate, considering the overwhelmingly favorable views about the CCC in this community.
Not everyone in this community will be able to attend this meeting. They thus will be relying on the people who the IOM has recognized as leaders to speak for them.
I thus am looking forward to seeing whether Lori, Mary, Carol, Pat, Adin, Charmian and Jennie give presentations that accurately reflect the views expressed by this community.
Insofar as any or all of these representatives choose to do that, I will be grateful to them, of course.
I’m not into advocacy enough to comment on who should or should not have been chosen, but I’m glad to hear that at least one person has been chosen to comment who can bring forward the well-thought-out arguments that you have. If the panel is happening one way or the other, it deserves the benefit of being told what the issues are from the patients’ perspective.
A few thoughts.
1. I don’t think you are a sell-out for speaking, and I offer my best wishes for your efforts with this.
2. Refusing the release the list of who they invited shows a lack of transparency. Who they didn’t invite indicates a bias. And I’d be willing to bet that CAA is the only research group they invited to speak. Other research groups include:
Simmaron Research
Whittmore Peterson Institute
Open Medicine Institute
The Mt. Simai ME/CFS Center
Nova Southeastern University CF Center
Hunter-Hopkins Center
The Fatigue Consultation Clinin- Utah
They have the names of every one of these groups. I sent them this list.
3. The IOM refused to accommodate people who are too disabled to travel, but who want to present oral testimony. Accepting written testimony is almost useless. I was told by an IOM rep that it’s impossible to get panel members to read all that they are given to read.
4. Asking us to speak doesn’t mean they care about what we say. We don’t know how they feel about us. They might care, or this might just be a contractual obligation to them.
Knowing 5 of the people who will have 7 minute slots, I suspect that all views will be represented. In the end, research is lacking and cannot move forward through inclusion with already existing funded collaborations on fatigue, pain and sleep studies. My NIH work clearly showed that grant awardees in these areas mentioned CF or CFS in their abstract, but on closer investigation, ZIP..NADA..nothing for us. We have been on the curb for more than 10 years AND if it was clear to me with my fuddled brain, it is clear to those advocates that top drawer, top priority scientific endeavor for ME and for CFS is the goal. NIH wants huge collaboratives with scientists working on pure biological research. FINE. But keep us out of it. Hovering over the wrong symptoms for years has left us in the mud. I will be unable to even listen to Monday’s meeting :(. However, to anyone who can listen, be there, spit nickels, etc..even cheer on our weary bunch. Thank you.
@Darlene
I think we need to look at the all important BOTTOM LINE !!! HELP—I want the hell out of this DEVASTATING DEBILITATING WRETCHED LIFE-STEALING disease of ME/CFS–who doesn’t!! DECADES of NEGLECT and WORSE like this to the ME/CFS population — NO MORE!!!
The ME/CFS Experts and Researchers have led the way for us in an UNPRECEDENTED VOICE–that LOUD and CLEAR ALL IMPORTANT message seems to at times ‘get lost’–and MUST be brought to the forefront!
The ME/CFS EXPERTS and RESEARCHERS are calling for the ADOPTION of the CCC and ABANDONING the IoM contract–”Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.” — Quoted directly from the EXPERTS’ and RESEARCHERS’ letter sent to Sebelius September 23 AND October 25, 2013.
These are DEDICATED ME/CFS medical experts and researchers STANDING UP on our behalf to EXPEDITIOUSLY get to the biomarkers of ME/CFS!! That is their agenda!!
Enter the POLITICS of HHS, CDC, NIH, IoM, P2P, CFSAC and associated alliances –with THEIR ‘political’ agenda — to our DETRIMENT!!!!!
This is a rigged game. Any participation or cooperation is foolhardiness. Haven’t we seen this game go on long enough? The only way to win a rigged game is to end the game. Demand CCC and don’t participate. That is the only way we can have a chance of success. Just ask the Gulf War Vets who got shamed by this government in this same process.
It will have a chance of succeeding if everyone demands CCC and does not participate in this.
Jenny, *thank you* for everything you do, to fight for us.
@Andrew Bokelman
Andrew, I get your overall point but to be clear, the CAA IS NOT A RESEARCH GROUP. They provide seed funding for researchers but the researchers are from different groups, including the ones you listed. No research group is being asked to present publicly at this time.
I agree that speaking out to the IoM and its panel is more helpful than not speaking to them. I don’t think Jennie should decline the invitation to speak.
IoM’s choice of speakers is skewed toward those who are less opposed to the IoM contract. I think that’s a problem and shows bias. CAA should not be speaking there, that’s for sure.
I hope that Jennie emphasizes the points that the vast majority of experts and patients have voiced:
Listen to our 50 experts and thus cancel the contract and adopt the CCC!
The vast majority of us agree with this (3600+ petition signatures) and by political necessity, we should speak with one voice as much as possible- this is what will get us real change.
@Darlene, I haven’t seen anyone say that the entire patient population agrees, but I may have missed that. I do think it’s clear that the vast majority of experts and patients support the 50 experts and their call to cancel the contract and adopt the CCC.
There may be some government workers who sincerely wish to help us. Over the whole history of ME, I think I would put Dennis Mangan, Wanda Jones, the Navy psychologist who was on the CDC CFS beat in the early days and perhaps a few recently at FDA (I don’t think we have enough info to say with confidence on them yet). That’s not a whole lot when you look at the concrete steps they have taken to help us and you’re talking about 30 years of a major disease.
to clarify, I don’t remember the name of the psychologist (it was not Wanda Jones).
Oh Patricia, so much jealousy in show business. This tired old rivalry and conspiracy theory regarding the Phoenix Rising site and your angry mob at the ME/CFS forums is SO 2009. It was your group of “advocates” that convinced many in the research AND ME/CFS community that we were a bunch of craziacs, with your angry, absurd defense of Judy Mikovits, a woman who knows nothing about our illness, and subsequent attack towards anyone who disagreed with her “HIV/AIDS in Africa” nonsensical comments.
Yes, the CAA should not be involved in this mess, but sheesh, give Jennifer a break. Just because she used to work with them doesn’t mean she’s working against us. In fact, to suggest as much with regards to a fellow patient, and one who is risking her health to try and make a difference FOR us, is unfair, and more importantly, sickening. Pun intended. @Patricia Carter
Just a reminder about my comment policy. Let’s keep the discussion on track, and stay away from making it personal. I allowed Patricia’s comment through and now this one, but that’s enough. I appreciate everyone’s participation in making this blog a place for discussion of issues, and not a place to flame the people you disagree with.
@Jeannette Burmeister Then why did they ask someone from the Phoenix Rising Forums to attend? They have a poll featured on their site where members have stated they’re against the IOM contract by a whopping 90%.
Thank you, Jennie. I hope this doesn’t take too much of a toll. Take care.
“Your role is to show up and present the best argument you can, whether or not you believe that you will win.”
100% with you on this one!
Thank you and wishing you strength Jennie.
I do believe that had all the diverse patient organization and advocates gotten together and decided to boycott this process and demand a cancellation of the contract, it would have left a very strong message to the IoM and it would have remained as part of the record. Even if they would have charged ahead, it would have been clear that it was doing so in defiance of the patient community.
Being that this did not happen, I commend you, Jennie for speaking up and even though we might not agree on all points, I am sure that you will give a very strong presentation. I know what a toll this will take on you and I appreciate you doing so. I know that you have not taken this challenge lightly and have put a tremendous work into it.
Had I been invited to speak and had my health allowed it, I would have taken the opportunity too. Since there are others speaking, I would have wanted my voice to be heard too.
Has the IoM left out a major component of our diverse voices? Absolutely. I would have wanted them to have invited opinions by at least one of the following; Marry Dimmock, Eileen Holderman, Jeanette Burmeister, Patricia Carter. I don’t think it it was random that they were not invited.
Thank you for doing this, Jennie and the best of luck.
Several people have commented about the content of the advocate presentations. For example, Lisa said that we should “give presentations that accurately reflect the views expressed by this community. Insofar as any or all of these representatives choose to do that, I will be grateful to them, of course.” And Justin said, “I hope that Jennie emphasizes the points that the vast majority of experts and patients have voiced: Listen to our 50 experts and thus cancel the contract and adopt the CCC!”
This raises an important question: do the invited speakers have an obligation to represent the majority view of the community? Don’t all views matter?
I’m in an unusual position because I am an individual. The other six invited speakers answer to their organizations’ Board of Directors. What they say will be the official position of their organizations. I have the freedom to express my own personal views.
I’m not surprised that people will judge my presentation based on how closely it aligns with their own positions. But I wasn’t invited to present on behalf of the advocacy community. I was asked to present on the one thing the Committee should keep in mind during the study. No expectation that I should be summarizing other people’s views was expressed by IOM staff.
On the question of telling the Committee that the contract should be cancelled, let’s go back to the Supreme Court analogy: I wouldn’t show up at the Supreme Court and tell them they should not have granted cert and heard the appeal. They’ve granted cert and are hearing the appeal. Telling them not to do so is pointless.
The same is true here. I will not be telling the IOM Committee that the contract should be cancelled. That’s not even up to them, anyway. And if they don’t already know that many advocates feel that way, they will know by the end of the day. Remember that several people *who signed the expert letter* are on the panel!!!!! I’m also not going to simply tell them to adopt CCC and we’re done here. Again, several experts who signed the letter are on the panel. If they want to make that argument to the Committee, they will, and they will do so more persuasively than I ever could.
Perhaps those advocates who have voiced an opposition to the IOM contract were not invited to present because all that has been said by these patient advocates is that the IOM contract should be cancelled and the CCC should be adopted. What’s the added value in inviting them to speak when there is nothing to add? What else would be said that would be helpful at this juncture? I don’t think any patients or patient advocates wanted to throw a parade when the IOM contract was announced, so to assume that those advocates who are working to provide the panel with guidance have been in support of this contract is absurd. Some are simply realists and people who take action rather than simply protest loudly. I sent a letter of protest early on, but now I believe that having the 7 advocates present is the best thing we can do right now. The time for protesting ALONE has passed, and it would certainly NOT be beneficial to use up the precious meeting time repeatedly telling the panel that we protest the IOM contract and want them to accept the CCC. THEY’VE ALREADY HEARD THAT. Now is the time to provide the IOM with SPECIFICS about the disastrous history, flawed criteria, inaccurate subject selection, ridiculously harmful name, etc. in support of our experts, and to arm the panel with the knowledge they need to review the science that truly addresses the proper disease, and in which they will see the true, hideous nature of it.
Wow! So much passion being expressed on this subject on all sides of the debate. Reminds me of the good old days of “XMRV”.
Before we all wear ourselves out over the HHS and IOM debate may I make one small suggestion to perhaps give us all something to focus on once we come up for air and a much needed hit of oxygen following Monday’s performance?
To me the HHS and IOM are only supporting cast members in the real fight that our patient community needs to be prepared to set our sights on. I believe if real change for the direction of this illness is going to happen it will be at a Congressional level. This is where the greatest power for change will lie. Get to the ones that control the purse strings and oversight of the governmental agencies charged with dealing this this illness and we can change the future. I do believe that this is the issue/task that we can find common ground among ourselves and this is where much of our next advocacy efforts needs to be focused. Don’t let the HHS or the HHS/IOM controversy derail and divide us and lose sight of where the sheer power of our numbers can make a difference.
Hang in there Canaries – I believe our story has only just begun to be heard. 🙂
Susan Kreutzer
Thank you, Susan–Canaries on ‘Alert and Standby’ !!!
Claudia,
You state that you don’t feel that the advocates that promote a cancellation of the IoM study and the adaptation of the CCC, have anything new to add to the IoM meeting, but that is really your personal opinion.
They still represent a large section of the patient and advocate community. I feel that if we don’t remit this message to the panel we are omitting the voice of many who still feel very strongly that this is a very dangerous course of action and can result in major harm to the patient community.
I feel that if we don’t reiterate this stand they might get the wrong impression that now, the majority of patients are embracing this study. I don’t believe that this is true.
Jennie,
To counter your analogy of the supreme court, what if you are an attorney representing your client in criminal court and you find that the the specific court that has been chosen for the proceedings could be biased against your client. Will you nit argue for a change of venue? The court has been chosen yet you will still be arguing what is for the best interest for you client.
I feel that this is similar to the IoM court/study. I think that they are the wrong venue and they have been given the wrong task for the best interest of the patients. Just because they are, so far, proceeding, should I stop vocalizing my protest?
Arguing for change of venue presumes there is a venue to change to. I think the better analogy is a motion to dismiss where you ask the court to dismiss the case, thus stopping all proceedings. You need a truly overwhelming slam dunk to win a motion like that. I get your point that we should make the motion anyway, even knowing we’ll probably lose.
I actually don’t disagree with that. It’s one reason why I am glad Jeannette, Mary and others will be speaking, and why it would have been more balanced to invite them (although Jeannette says she would have refused the invitation). I don’t think you should stop making your case, Gabby. But I am not obligated to make that case. I’ve chosen to speak to other issues. To close the loop on the analogy, you don’t make a motion to dismiss every single case; you use your judgment to select which tactics are most likely to serve the interests of your client.
@Keith Baker I agree with Justin and the others on this. Not participating will come off like we don’t care enough to do so. Personally I’m not sure a petition with a few thousand signatures (which they might argue could be fakes) won’t make a difference. After all, they ignored the doctors/experts letter, so why would they pay attention to a letter with patients signatures?
“A fellow advocate commented to me last week that refusing this opportunity to provide input is a bit like refusing to vote and then complaining about the government. I don’t know if IOM will get it right; I can’t even assess the odds of that happening. But I do know that if we refuse to speak or if we withhold our input, then we place a very heavy burden on the ME/CFS experts on the panel to make all these arguments for us. If we refuse to speak out, then we make it easier for the panel to come up with the wrong answer. I have no delusions about whether anything we say will alter the entire course of the study. But I do know that if we say nothing at all, we are playing right into the hands of those who think we’re not “qualified” enough to be worth listening to.”
Yes. Yes, yes, yes, yes. I am glad to hear that you will be speaking, and that you will be attempting to answer the question they have asked. They may still get it wrong, but if we refuse to give any input, the chance of that goes up considerably. This is the time to adapt and move forward, and do everything we can to give them the best possible chance of getting it right.
@Susan Kreutzer
There is a serious problem with that: Congress doesn’t do research independently, they allocate funding to the alphabet soup agencies. Look at other areas where Congress has tried to get directly involved such as Autism and GWI. If the “Executive” agencies such as CDC, HHS, NIH, etc aren’t on board than all that will happen is more money will be flushed down the toilet or diverted to hay fever or NIH retreats to Tahiti. The only hope is to work outside the government for diagnostic biomarkers and then come back to the Feds when they have no choice but to deal with us. Currently Congress is too dysfunctional to pass a budget never mind take on this hot potato.
@Jennie Spotila
Jennie like it or not you are a “public” figure in this debate. You are a former board member of the CAA, on an FDA panel, have Youtube videos and have a public blog. As such, I think that you are representing more than just your individual beliefs when you go before the IOM. If you hope for some unity and broader support in the future it seems like it would make some sense to cast a wider perspective than you might do otherwise. But we still have first amendment rights – for now anyway – so of course you are free to use them in any way you want.
I may be seen as a public figure by virtue of the blog, I don’t know. But I answer for my views alone. No one pays me or contributes to this blog. I am not an organization. No one is paying for my travel to attend this meeting. No one is helping my husband carry the extra load at home or taking care of me because all my energy has been invested in preparing this presentation. It’s just me and my opinions.
I have an obligation to tell the truth as I see it. I have the same obligations and goals as I do in my CFSAC work and public comment and this blog. I say what I think, and some people agree and some do not.
I could have chosen to spend my few minutes on a summary of the last few months, or talking about the diversity of views among advocates about the contract. But I’ve chosen to answer the question they posed and express my opinions about the case definition. As you say, that is my right. Some people will agree with what I say, and some will not. That’s ok.
@Jennie Spotila
Personally, I wish you would dedicate your energy to efforts outside of government. It’s nothing but a time and energy suck. Resources would be so much better used than endless FOIA requests and the “hope” that this time the CDC, NIH, IOM, HHS, Congress etc will “get it”.
I agree that government will only get us so far. I don’t hope that the agencies will finally get it so much as I want to create a clear paper trail that will be of use in a variety of contexts. Government is also not the only venue I’m pursuing.
@Gabby – I did get a 3 minute slot to speak.
I agree with Susan. The IOM fight is just one of the latest acts in a 30 year long story of abuse and neglect. We need to bring this bigger story to legislative leaders and the media.
@floydguy
I will have to disagree with your analysis. Congress has much more power than I believe most patients and advocates understand. There is an art to this dance and unfortunately (in my opinion), advocacy for this illness in the past has missed some great opportunities to make it out on the dance floor with a splash and then to stay out there and make sure everyone keeps dancing in step.
While I agree that working through private groups can be an effective way to get a bottle neck unstuck when government appears to have become somewhat dysfunctional. But I strongly believe that without the financial backing and support of the U.S. government the road ahead will be extremely difficult to help those who having been waiting at the back of the line for half of their lives.
Of course, we all have the right to make an individual decision on how we want to spend our precious energy advocating for this illness. I have chosen my path and I welcome anyone to join me as I fight the fight walking the halls of Congress or standing on the sidewalk waving a flag either in person or through letters, phone calls, e-mails, interviews or social media postings.
I also wanted to address the comment from @Mitchell where he stated “Personally I’m not sure a petition with a few thousand signatures (which they might argue could be fakes) won’t make a difference.” I am concerned that there are other patients who also may feel disillusioned that such petitions with a “few” thousand signatures won’t make a difference. However, I can tell you from my experience being back in Washington and working behind the scenes over the last few months that this is not the case. These petitions have and are continuing to make key players in Washington sit up and take notice.
Will these petitions be a singular answer to our pleas for help? No, not by themselves, but they are an excellent start. As to whether someone could argue that they are “fake” – certainly that is an argument that could be made, but it would be unfounded. Every signer on these petitions, whether they appear as anonymous on the form that was printed out for public view, was required to sign up with identifying information behind the scenes. If evidence is needed to substantiate that there are “thousands” of ME patients/supporters in opposition to the HHS IoM contract there is adequate evidence to support such a claim.
I hope some of the discourse that is going on here on Jennie’s blog and elsewhere out in cyberspace is helpful to anyone who might be confused by the chess game that is being played out in this ME/CFS saga. I can only offer up my thoughts and opinions, as have other patient advocates who are working themselves far beyond where their bodies should be pushed. Most of us are doing this because we care about solving this illness for ourselves and for others. We may not always agree on how to go about this, but such is the process of democracy, which this country was founded upon. Unfortunately, since ME is both a neurological and immune (organic) illness, effecting most every organ in our bodies, it even further heightens our emotions and fight for survival.
Keep asking questions. Don’t give up now – we are making progress! The best thing we can do right now is to figure out who you think is most skilled and effective in taking on this fight on your behalf and then supporting their efforts in whatever way you can.
Susan Kreutzer
ME (CFS) Patient Advocate
Former Government Regulatory Attorney with the Ca. Dept. of Insurance
If you look at congressional records for the appropriations committees House and Senate for the last 15 years or so, you will find recommendation about CFS…good recommendations, everything from up the funding to take all the responsibility off the CFS big working group. It’s a bit of work, but there is no lack of congressional support. HOWEVER, NIH does not have to do what appropriation committees ask. Part of the IoM process is to raise a stink, grind the axe and that includes informing your representatives. Public health agencies have ignored congress for years. NOW, that means that most citations about CFS have been ignored, but some have been followed …like the SOK meeting. Parallel action is needed. Many of those people who can get to DC have been to the health aides on the hill. SOMETHING has to make us a larger priority, as there are thousands of groups, united groups standing in line before us. It is a huge problem. IoM, for or against, keep calling and shouting about the damn 30 years, lack of transparency, people dying, sick kids and lack of research money. We are making progress compared to where we were 10 years ago..but it is like crawling through the desert carrying a heavy load. Thanks to all of you.
Jennie – “May the force be with you!” 🙂
Love it!! Thanks Ren!!!
This appears to be as good a place as any to ask this question. I keep seeing references to people dying from ME/CFS. Is there any substantiation of this claim? I am aware of people with ME/CFS dying from suicide, but what numbers are dying from the ME/CFS itself? What are the mechanisms of death?
I raise this question not to be ghoulish, but because I think that making such claims, if unsubstantiated, lends support to the idea that we are mentally unbalanced if we are dramatically overstating the case. I don’t think most people would see a death from suicide as the same as death from ME/CFS, although I certainly understand how ME/CFS could lead to suicide.
Fantastic question, and I’m so glad you raised it, Rebecca! The short answer is that there is almost no longitudinal data that answers the question.
Dr. Lenny Jason published a paper in 2006. He examined a memorial list of 166 CFS patients who had died, and analyzed the causes of death and age at death. Cancer and suicide were the two most common causes, and cancer deaths occurred much younger than the general population. However, there are significant limitations to the study given the selection of a memorial list for the sample cohort. Still, this is probably the best published study on the subject.
http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Causes%20of%20Death%20-%20CFS%20Patients.pdf
Dr. Lily Chu, who is on the IOM panel, wrote excellent testimony to CFSAC on this issue in 2012 and she gave me permission to publish it on the blog:
http://occupyme.net/2012/06/13/cfsac-comments-from-dr-lily-chu/
She argues very persuasively that longitudinal studies and other research should be done to answer this question. Right now, we have a lot of anecdotes about cancer, myocarditis, and kidney failure, in addition to suicide. But anecdotes are not data, and we need published data to convince policymakers. We desperately need longitudinal and natural history studies. CDC has been unwilling to do this on a large scale. The various biobanks started by the CFIDS Association, CFI, and others could be a resource, but it would require regular standardized data collection from those participants. I’m not sure if studies like that are being planned.
@Jennie Spotila The venue = the ME/CFS Experts and Researchers as written in their Open Letter to Sebelius, HHS — original letter dated September 23, 2013–reiterated in an update with additional signatures dated October 25, 2013.
Thanks for the info, @Pat Fero , this is the most interesting subject for me. Do you have anything to add about lobbying- how to do it, our history at it? Do you mind if i email you. i am at (ignore the slashes- used to evade spamers, hopefully) ///justinreilly// at //hotmail D0T C0M.
At some point, we will reach a critical mass of influence in Congress, and then everything will flow like crazy from there. The tough part will be getting there, but we will do it, just a matter of time.
@Susan Kreutzer , I totally agree with you and thanks for doing what you’re doing (and thanks to those like Pat who have come before.
@Jennie Spotila , You were invited, I would guess, as a patient representative since all of the others are from patient organizations. I think you were invited, rather than another patient organization, precisely because you have a less demanding viewpoint on IoM than most patients- just look at who was invited, including you- it skews toward CAA’s view.
Regardless of that and regardless of the fact, as you say, IoM staff didn’t expressly ask you to represent patients, it would be nice and helpful for the 17Million patients fighting for our lives if you did. Who cares what IoM staff want anyway?
If you choose not to (as you indicate) try to represent the majority of patients by emphasizing that the experts must be followed, contract cancelled and CCC adopted, then will you please make it clear that you are speaking for yourself and your views are not representative of that of the vast majority of patients and experts who have expressed views on the topic. I think doing that is very important. And not saying something boilerplate and somewhat misleading like “my views are not necessarily representative”- please say they are “ACTUALLY NOT representative.”
@Jennie Spotila , sorry, I meant pls say your views “are ACTUALLY DIFFERENT and less opposed to the IoM contract than the opinions of the vast majority of the thousands of patients and experts who have expressed their views.”
Thanks, Jennie!
Rebecca, ”…20% of the deaths were not only related to cancer but that the cancer deaths occurred 15 years earlier on average than cancer deaths in the population”.
Why aren’t the American Cancer Society, Komen Race For The Cure, and anti-suicide groups holding hands with us?? Is anyone reaching in their direction?
Thank you for doing this, Jennie, and for reporting about it.
The question that weighs on the minds of many within the chronic fatiuge syndrome (CFS) community is whether the actions and processes taken to date by HHS, illegal? If so, then the contract and this IOM panel is rendered null and void. Refusal by HSS to disclose the contractual obligations even under FOIA requests, makes this assumption quite evident.
The fact of the matter is that HHS is preventing us from working together and participating by deliberatly creating a cloud of obfuscation which is in direct violation of White House policy as stated below.
Eco
My administration is committed to creating an unprecedented level of openness in government. We will work together to ensure the public trust and establish a system of transparency, public participation, and collaboration. Openness will strengthen our democracy and promote efficiency and effectiveness in Government.
— President Barack Obama
http://www.whitehouse.gov/the_press_office/TransparencyandOpenGovernment
@Jennie Spotila
I thought Dr. Jason was doing a longitudinal mortality study?
Good question, Janelle. He might be. Do you have a link or other info on it?
Anyone who has read Jennie’s blogs knows that she has studied this situation and presented information in a straightforward, unbiased manner. Why all the controversy about what she will say and who she represents? I feel reassured that the IOM has solicited her input. Other patients will be speaking as well, and I don’t see a particular bias when looking at the list of speakers. This is the best shot we have and there is no one I would trust more than Jennie to present salient information in an appropriate manner. What the IOM will do as a result is beyond our control.
The IoM is part of a political set-up.
@Jennie, it is quite obvious why they called you to speak. However, you are an advocate and in that position you are called upon to represent the CFS patient community especially in reference to the behind the scenes action of HHS and IOM to ram this ‘contract’ through in secrecy. They did not pick you to represent a patient of only one. If they did, then you should relinguish to another advocate. But you have a unique opportunity to address the concerns on the legitimazy of the IOM panel as well as the contract. If NIH P2P panel is going to write the final report of the IOM Panel Task Force, then the outcome is certain to be CMI. Are you okay with that?
I’m thrilled you were chosen to speak, Jennie. While it would be nice to know how and why IOM picked the representatives that they did, at the end of the day they may very well have chosen you because you write an exceptionally articulate blog. You use careful, reasoned logic yet remain passionate and unafraid to challenge those who need to be challenged without resorting to vitriol, histrionics, and conspiracy theories. Moreover, you have a grasp of the bureaucratic minutiae needed to effectively argue our case that is unequal among ME/CFS bloggers. Indeed you are often able to say the very things I want said better than I’m able to say them myself most days.
Besides, every ME/CFS patient is allowed to submit his or her own written testimony. Instead of bizarrely insisting that you, Jennie, are somehow obligated to speak for us all (as if you could) or even more bizarrely, obligated to clearly disassociate yourself from us (as if I want you to!), one would hope individuals with such strong feelings about what should be said would just submit their own damn testimony. You owe nobody an explanation for choosing to speak (or not speak, if you so chose) at the IOM meeting or for what you will say. I do hope you’ll feel free to say whatever the f*** you want to say. You’ve more than earned your place to do so. 😉
Wow, thank you Michelle and Trina. This is high praise from you both.
I’ve been thinking over every comment in this thread, including the ones I disagree with. I think (hope) it has strengthened my presentation, so I’m grateful for that.
One thing that concerns me is that because I am not using the words some people want (cancel contract/adopt CCC), they assume they will disagree with the content of my presentation. I hope to get a fair hearing from the full audience – IOM and advocates – and if people want to criticize me, that they do so based on what I actually say and not because I didn’t say it the way they wanted. But I am also well aware that I have no control over any part of the audience. I will say what I believe to be true. People will listen/react/ignore as they see fit. That’s the way it works, and I’m ok with that too.
People are working hard as we are in the FIGHT for our LIVES and this couldn’t be a more CRUCIAL time to be verrrry verrrry aware of what is up AGAINST us!
I was glad to see that written submissions can be give after the 27th. If we see any holes left or points of contention that need more opinion, then we can write comments and still address it after we see what everyone presented. That is what I am going to do. The best to all of you who are going.
I would appreciate it if you would consider a monetary token for your travel costs? Reason being, I greatly admire your skills, leadership and your efforts to represent us on any level. If I could travel I would have something to say to a lot of people! But I can’t and YES you do risk your own health in this, a serious decision INDEED. We do not take taxing ourselves lightly!
If you will not accept my token, please know how much I appreciate your presence in these talks. I appreciate the fact that anyone is anywhere, speaking for me.
THANK YOU JENNIE
In Appreciation,
Carol
Minnesota
Carol, your offer means more than I can say. I can’t accept your gift, but please know how deeply I appreciate your offer and your support. Thank you from the bottom of my heart.
Rebecca, Janelle, Jennie, and all:
Yes, there will be a new and very well thought out ME/CFS Mortality Survey coming along soon. About a year ago I suggested to Lenny Jason that it would be a good idea to do much more on the subject of deaths from ME/CFS, as I am convinced that many people do die of it, but this fact is never recorded on death certificates. Patients do seem to die in the same manner as those with HIV/AIDS do – not directly, as with metastasizing cancers, but as a result of the cascade of illnesses that befall many with the disease. And they die of suicide, of course, from lack of hope for treatments and an inability to live with the effects of the disease any longer.
Lenny liked the idea, and he, one of his assistants (and others on his staff), I, and my husband (both of us have market research experience) have all been working on the survey questions for about eight months. It is almost ready to be announced and sent out to all the ME/CFS forums, blogs, patients and advocates we can think of. We will be asking everyone to send the survey to all of their contacts. It is tremendously important that this survey get a very wide distribution, since we need to get in touch with those who knew well someone who died and can answer the questions.
If we can get a significant number of respondents reporting on their loved ones who died, we hypothesize that it will document that yes, this is a fatal disease. It is not only “serious” but “life threatening.” The FDA seems to make a distinction here and gives less urgency to those diseases not considered life threatening. It would be an important piece of evidence in trying to get the FDA to approve new drugs or repurpose drugs for ME/CF; to get more funding for research; and maybe even to promote a change of the non-informed medical community’s mindset about it.
I will let everyone know when this survey is ready for prime time. Should be in the next two months.
Billie Moore
I’m very glad to hear about this project Billie. Let me know and I’ll promote it through the blog.
I definitely will. Thank you.
Billie
Is it possible to ask research facilities (as in Harvard, Stanford-Calif, etc.) who probably have a really good idea who is dying out there, to pass out these surveys? I LOVE Dr. Montoya at Stanford. I watched a you-tube.video on one of his peer presentations and he said, “One Day Every Physician Will Owe “ME/CFIDS” Patients An Apology….for me that was like a “WOW” thing.
So just wondering if we could go that route also.
I am just hanging around here, I have learned a few things in research, just wanted to put it out there.
Thanks,
Carol
I think that is a great idea, but…how likely are they to reveal the names of patients – alive or dead – to us? Wouldn’t that be unethical? I had thought of that also but assumed that the doctors would not give us the contacts. However, we can certainly check with some of the experts and see if that is a wrong assumption on my part. Might be. It’s worth asking!
Billie
@Billie Moore
This is such an important topic, I think it would be certainly worth it to try. Maybe it would be lawful and ethical if the families signed off on it (of course that would be extra paperwork some doctors wouldn’t have time for). Thank you, your husband and Prof. Jason so much for pursuing this!!
@X’s For Eyes
and I believe it was 24-25 years early for each group, not just 15.
I have asked one well-placed researcher about this about 2 years ago and he said he had some interest from a cancer group and it might go forward, but haven’t heard anything since. I agree we should be contacting specifically the non-Hodgkins lymphoma groups especially (and other cancer groups) and heart disease groups.
The problem is there are no real advocacy groups that have taken an interest in this, so as with most ME advocacy issues, it would fall to individuals. I strongly encourage you to contact orgs and communicate your efforts through Phoenixrising.me forums and/or Facebook ME groups. In any event we need more people for the IoM at these websites, so if you or anyone else here is not already involved, PLEASE come on over!
I urge people to come to http://www.MECFSForums.com if they want to participate in advocacy. MECFSForums was started because the forum to which Justin referred would not tolerate real advocacy which questioned the leadership and actions the CFIDS Assn of America . A great deal of advocacy has been done and continues to be done through http://www.MECFSForums.com
Patricia Carter
Admin., http://www.mecfsforums.com
Justin said:
“The problem is there are no real advocacy groups that have taken an interest in this, so as with most ME advocacy issues, it would fall to individuals. I strongly encourage you to contact orgs and communicate your efforts through Phoenixrising.me forums and/or Facebook ME groups. In any event we need more people for the IoM at these websites, so if you or anyone else here is not already involved, PLEASE come on over!”
Thank you, Patricia–as I am not such a ‘techie’ I wasn’t sure how I might ‘navigate’ in a forum. BUT, the very circumstance of being STRICKEN with ME/CFS–only to find out what a POLITICAL disease it is–keeping p/w ME/CFS HOSTAGE and CONFINED with NO conceivable HELP nor HOPE ‘for a life’–I definitely have LOTS to say on the ADVOCACY front–and had been ‘viewing’ mecfsforums recently.
AND, I am happy to say that yesterday I have joined in the MECFSForums–we have MUCH important work to do–OUR VOICES TO BE HEARD–JUSTICE to be served!
Thank you, Jennie, for posting–‘May the FORCE be with everyone tomorrow’ in D.C.!!!!
I do agree that it would of been wrong for anyone offered the opportunity and who was capable of doing it.. to knock it back but I too think Jennie was given this chance due to her views on it.
Im sure we are hitting some biased with those who arranged the whole IOM thing all the way.
“The agenda lists the other advocacy speakers as:
Lori Chapo-Kroger, PANDORA Org
Mary Schweitzer, Wisconsin ME/CFS Association, Inc.
Carol Head, CFIDS Association of America
Pat LaRosa, New Jersey Chronic Fatigue Syndrome Association, Inc.
Adin Burroughs, Phoenix Rising
Charmian Proskauer, Massachusetts CFIDS/ME & FM Association”
One thing I notice is that there is no very strong ME voice there. That isnt right as it is well known that CFS people outnumber ME ones… maybe as much as only one in every 6 with CFS have ME. This makes often mixed ME/CFS more so likely to speak with the voice of CFS people rather then ME people.
For the above reason I do think they should of certainly given someone like MECFSForums (which are more based towards ME in my views) and Partica Carter an opportunity to speak in a 7min slot.
“Right now, we have a lot of anecdotes about cancer, myocarditis, and kidney failure, in addition to suicide.”
thanks Jeannie for that comment, I didnt know that and that is scary news for me. I had to be ambulanced to hospital only last week due to my ME stuff (POTS making it so I was severely dehydrated even thou I’d drank 4-5L that day). While there a blood test showed my kidneys werent working properly.
Yesterday I got dehydrated too couldnt bear the thought of being stuck in hospital waiting room for hours before being given a drip (last week I ended up collapsing again in the hospital toilets as after being ambulanced in I had to wait over 3 hours) so didnt call ambulance and this morning, I had some kidney pain happening in one of my kidneys.
Ive had so many complications with this illness Im postive its going to kill me. I lost my balance yesterday when a dump trunk was passing by me slowly and almost fell under its huge wheels. Last year there was two occassions when I blacked out while crossing roads and a support worker had to grab me and pull me off the road.. another occassion year before last, I collapsed on the road section of a busy carpark.. support worker had to stand on road to prevent cars from running me over (I couldnt get up for a while).
Surely there must be lots dying in accidental deaths with this illness. Year before last, I confused my drugs and ended up in hospital on a drip due to an accidental OD. This illness has near killed me so many times now, its just a matter of time before it does. (that’s all not including the time I ended up suicidal due to it and ended up in the ICU for a week after a suicide attempt).
There should be a long term study over time on the severe ME group to see how many of us die from this illness.
I really hope I hear in Jeannies speech of just how serious ME can be… its not just the risk to our lives but many of us including myself.. have to often use wheelchairs etc. Our level of disability even if we manage to leave our houses is so severe. Any definition and thoughts on this illness should be paying more heed to the severe group which hardly ever gets much of a mention in things other then a brief recognition we are out there but then nothing else.
Ive had doctors tell me I cant have “CFS” as Im too ill… these doctors all believe ME and CFS is the same thing. So having this illness labeled ME/CFS certainly doesnt work.
@Patricia Carter
I am sorry for the oversight. I was very brain fogged when I wrote that. Yes, please also go to mecfsforums.com. My understanding is that Patricia is correct that PR forums under Cort Johnson would not tolerate real advocacy, especially that opposed to CAA and thus a number of our real advocates were banned and started mecfsforums. Additionally other excellent advocates were outraged and voluntarily left PR for mecfsforums. Please also get involved with the advocacy there.
I have no problem with people promoting one or more forums. I’m on both Phoenix Rising and ME/CFS forums, myself. I’m certain, however, that both PR and many of its members believe plenty of “real” advocacy happens there.
Justin, Patricia and all,
Phoenix Rising as it is today supports strong advocacy. Anyone looking at their dedicated IoM section can readily see that advocacy is alive, strong and welcome.
@Jennie Spotila
It was my understanding that once a CFS patient ends up with a diagnosable condition such as cancer or heart disease–which will actually kill a person–that they no longer have CFS. Can you confirm or deny this?
That’s what Fukuda says, which makes sense from the point of view of research studies (the original intent of Fukuda). Common sense (and just about every ME/CFS expert out there) says otherwise. What’s interesting about the CDC multisite study is that there were only two exclusionary criteria: age over 65 at onset and HIV. So cancer, heart disease, etc does not exclude a patient from that study.
@Jennie Spotila
Point is, in a discussion with comments about how deaths in CFS should be studied…there are no deaths from CFS to be studied. Considering that the CDC has argued that even lymphadenopathy could be a reason to exclude a patient from a CFS diagnosis (in spite of what Fukuda says), I can’t say I’d trust them on the seemingly friendlier list of exclusions in the multisite study.
It would follow that they’ve never possessed sufficient motivation to explore whether CFS can lead to any of these other conditions that actually do kill people. How convenient.
Actually, they’ve never possessed sufficient motivation to explore a lot of things about the disease, including the risk of developing cancer, etc!