Opening Pandora’s Box: PANDORA Cozies up to IOM

[Marty]

The IOM is going ahead .... because we are letting it go ahead. Not only are we letting it go ahead but, we are encouraging it by trying to vie for a seat at the table.

Hang in there, Gabby; your outrage at the political naiveté of the patients is right on, allowing themselves to be played like a harp by a government that can't afford their disease. They really seem to believe that cooperating with the enemy is the way to win a war. Is it a war? Try to come to any other conclusion from the 25 year history of the CDC. Keep up the crusade, Gabby; some may listen. The war is winable if enough participate.

 

[caledonia]

I know many think that all these e-mails and/or phone call are counter productive. They are not! I hear from reliable sources that each piece of mail, each signature and each phone calls matters. Our congressional representatives have to listen to us. They have to read each piece of mail. Just send them a copy or link to the letter from the 35 experts in the field stating their opposition to this contract and ask your representative to look into this.

I was wondering if our representatives' Constituent Services Office might be able to help us. It's set up to help people with government red tape and bureaucracy. But I'm not sure if it would be powerful enough for us or not.

One of my senators defines it as: If you need assistance working with or getting answers from a federal government agency, I may be able to help.

Another one says: Help with A Federal Agency

One of the most important things I do as your U.S. Representative is help residents (of my District) with problems that they may encounter with federal government agencies, such as the V.A., Social Security Administration, or Passport Services.

Although I cannot override the decisions made by a federal agency, I can often intervene to ask questions, find solutions or just cut through the red tape.

 

[Andrew]

I've been doing what I can to motivate the patients in my support group to sign the cancellation petitions etc. I don't know what else I can do. Also, staying away won't improve anything. That's what the ME experts did during the meetings that came up with the name "chronic fatigue syndrome." Their refusal to participate did nothing to make it better. And their refusal to participate did not stopped the government from claiming that the meeting consisted of all experts.

Engaging the enemy is not the same as cooperating. I applaud what the 35 experts are doing. They are not simply doing nothing. They are taking their position as researchers and saying they will continue to use the CCC. This is not doing nothing, because they are in a position to promote the CCC by virtue of them using it.

 

[Ecoclimber]

The historical precedent by the IOM on the actions, analysis and attitude over the last 10 years is to change or shift policy from a symptom-based system to an evidence-based system in defining patient diagnostic criteria. This is their policy directive. This would require the establishment of a medical lab test to determine if a patient has ME/CFS or any other illness for that matter. There is no such test to date

Therefore, without the medical/biological data establishing the evidence-based criteria needed to determine if a patient has a particular illness, patient symptoms would now be categorize as psychogenic in nature. Does everyone get this fact and what it means and why it is important to protest? Our ME/CFS researchers/clinicians certainly did!

This is why it took the IOM 10 years before approval from the VA. They changed the label from GWS to CMI which resulted in most, if not all the symptoms falling into a psychogenic category. This is why they stated in their communiqué that the most effective treatment for CMI is psychogenic therapeutic modalities.

 

[justinreilly]

Thanks to Jeanette, for this detailed analysis. I thought PANDORA’S paper was a mixed bag. I think they had some good stuff in there, saying they do not support the IOM contract, submitting an excellent list of experts in only a few days, and their “requirements” for a Case definition procedure. They also provided some useful info.

On the other hand, they should not be stating that this is a done deal. And obviously, as Jeanette noted, the contract can be easily cancelled. They didn’t tell us about the nomination request. And, as Jeanette says, they listed a long list of huge problems with the contract, but seemed impassive about them.

I don’t think they are malicious like CAA, but I expect more from them. Their advocacy is too tepid as usual.

 

[taniaaust1]

Naive or co-opted? Its almost always the naive who are co-opted. One of the problems we face as an ME community is political naivety. That includes me. I am learning, but its too slow. All our advocates are learning, but its too slow. To paraphrase a line from a TV show, we are playing checkers, they are playing chess, but we naively think its the same game.

Its impossible to say what most of us think about this, as most of us (the CFS, ME or allied communities) are not involved, and not speaking out. Yet at least some of those are unaware of the issue. Being non-informed or ill-informed leads to inaction. We need to reach people outside the reach of the usual blogs or sites. If we cannot connect to more ME patients, then how are we going to reach those without a vested interest?

We also cannot say what the outcome will be. We can only state the risks. How many in any community downplay or ignore risk? A lot? It will be all right. The government knows what it is doing. They are experts, trust them. These messages are part of what we are facing as advocates.

I started writing a blog that overlaps a little with the blog on Pandora's box, which has now been amended to cite the Pandora blog. Its an opinion piece. I hope to finish in a day or two.

Alex.

I agreed with all your post Alex except the part which said that "We also cannot say what the outcome will be". I personally think that as long as we arent being naive about what will go on, we can in fact say and know what the outcome will be... eg as long as they have more people on the committee who they KNOW are more towards Wessely views of things and poor CFS definitions, the CCC has NO CHANCE at all at being voted for or a good ME/CFS definition before used.

There is a number they can have on that committee in which no matter how dedicated the others are on the committee about changing things for us for the better.. they will be overrun when it comes down to any voting. Things cant change while they have selection biased towards the committee members. They can not be trusted to make things nonbiased

We already know they are biased.. since when does an already biased org suddenly become non biased?? They suddenly dont. Thinking they will and have suddenly changed even if they put some token ones onto that committee to make things look better to us.. believe me they will still be outnumbered, Im sure they would make sure things wouldnt be slewed in directions they dont want going on.

..............

It's fear which is making people bend and not keep standing up with a strong NO.. we as a group must not support this.

Im shocked that even with what happened to the gulf war syndrome group.. that people here believe things will be okay if things go ahead. Its by what happened there, has already been proven it wont. We NEED to learn by the mistake they made and not make the same mistake. I ask all those who have quit and now giving in to this going ahead and not making a strong stand that our community doesnt want this, to ask themselves, how will be different then what when on with the GWS group... they got well and truely screwed by the panel due to the balance of power which got set up on that panel. How is it going to be different for us?

All it does with getting some knowledable ME people on that panel is put them into a position in which it can be later said that WE supported that panel!! and they will be powerless due to lack of numbers to help us at all. Unfortunately the naivity of those with ME/CFS keeps screwing up things for all of us and those who have been around with this illness a lot longer and looking at the politics of it all deeper. I dont blame others for this but its very distressing to me seeing another huge mistake being done due to people are GIVING UP due to fear of that panel.

I said NO NO DONT DO IT.. when our group (whatever its called) supported ME/CFS to be redefined from scratch again as I knew what would happen (this!!).. our org let us down by not playing safe enough due to having too much trust based, instead of pushing for the CCC and now our own community is going to screw us up further as it still has too much trust when things have not changed.

One should never believe things are changed till there is actual proof they have changed, instead as a community we keep on bending to be screwed by them time and time again.

As Alex said, its like playing chess and THEY are the masters, they know our weak points, they know how to get at us. We must STOP looking at just what is happening in the NOW moment but be constantly looking well ahead at where what we do is going to possibly be affecting us in the future. Are we playing into their hands (gov, insurance companies etc all the ones who want this illness buried) in some way? These are not our friends...

If one looks upon it all in terms of what may go wrong, something which we should be doing when we are dealing with non trustworthy people/places.. our eyes are then often opened to the bigger picture of it all and we will see what may be otherwise missed.

 

[taniaaust1]

I'd like to add if people arent going to stay strong and stay determined to not be making new definitions for ME/CFS (and just pushing for the CCC), it is also showing a lack of support for those 34 brave souls who did that letter and stuck to what they said even when pressure probably got put on.

They have risked things by doing that and as a community we are showing we are too weak to support them. They started up a momentum for something we need to keep at, they gave a good example of grouping and standing up for what is right. What they did if we dont show support for them properly (paying lip service isnt support, making a strong stand ourselves is).. who knows when we next will have a group of medical professions group and do something like that? If we dont support them properly are we encouraging that kind of action for us in future or will it be discouraging to those brave souls?. How we react now, could very well impact on what experts will do for us in the future. So is something else people should be considering.

We can loose a lot by what we choose to do now.

 

[taniaaust1]

The IOM is going ahead whether we like it or not, we may as well try to participate in the process to prevent it from becoming a complete disaster?

How thou?.. how can being involved in this process prevent it being a complete disaster? How when committee will be biased one direction leaving the rest (the knowledable ones powerless). Decisions are based on a "MAJORITY" vote.

You may think some on the panel may be naive and hence swayed by education.. but what if the psychs and stuff they have on that panel dont want to be "educated" about this illness by any knowledable ones on the panel? Im sure those ones on the panel (naive about ME) already have a strong biased there around how they think of this illness.

 

[taniaaust1]

We can fight against the contract and also prepare to advocate at the meeting.

That comment kind of made me think what the jewish people were probably saying during the Holocaust. They willingly went to the ghetos (where we all know what later happened there). They trusted things wouldnt get too bad and would change. They tried and tried to work with those who were biased against them. They knew they were biased yet they kept trying to work with them instead of taking a strong stance and fighting the situation..they fought but in a complient way which didnt carry any power.. from that position they couldnt change a thing.

Was that a good move? should they have fought and really fought from the start and not have "given in" to what was going on and was wrong. Maybe things would of been different if they did early on as a group have riots in the streets.. before people, the general community were "brainwashed" against them. . I see our situation as alike, what we are doing and choose to support RIGHT NOW, will make a HUGE difference to what things will be like in the next 5 or 10- or 20 years. People can be brainwashed against us and this illness. Who is going to listen to psych patients who have imaginary complaints? We find advocacy hard now, but what then??? .

This contract Im seeing as a DEATH CONTRACT. It will end up being very bad for us.. people are going to die due to it as this illness when its severity gets played down more instead of things becoming better for us.. watered down definitions eg more people who should be being treated being viewed as psych patients and hence having major health issues, sometimes serious ones ignored (Im already an example of this.. things thou are about to get worst).

Other advocates of ours will be giving up and committing suicide (our advocates are a tired bunch and sick of fighting).. destroyed by where this illness has headed after all these years of effort they've put into things.. going backwards more. I personally believe its not going to be good going ahead with that contract and that people will die due to it.

 

[taniaaust1]

The IOM is going ahead .... because we are letting it go ahead. Not only are we letting it go ahead but, we are encouraging it by trying to vie for a seat at the table. Those that are doing that are playing right into the hands of HHS. If we do have a couple of our experts at the table, they will have the ammunition to claim that we did have an input into the process. A couple of experts cannot control anything on a panel of 15-18. One only needs to look at the GWI fiasco.

This contract, contrary to what the IOM claims, could be cancelled. It is not legal for government to wrote any contract that they can't back out of. Could you imagine the chaos if that were to happen? Why are people so quick to believe a single statement from PANDORA that IOM told them that this contract can't be cancelled? Really????? It wouldn't bode too well for the IOM if this were to happen, would it?

Jeanette states:



Have you been asking yourself why is this being rushed yjtrough like a train who lost their brakes??? Why if they are so confident that this contract is solid are they worried about protests from ME/CFS stakeholders?

Yeah any contract can be cancelled, it just would probably mean there may be some penalities for it being cancelled.. maybe they would have to pay out big compensation somewhere. That in itself if it did have to happen could be good as it would make them far more careful next time before rushing ahead (this was probably purposely rushed to be put in place before it was opposed) and making contracts around ME/CFS which shouldnt have gone ahead in the first place. It sure would make someone look bad!!. It would make them make sure they have things right in future before putting contracts in place as far as we go.

It is totally wrong they did this the way they did.
..............

Contracts which cant be cancelled, what a load of spin and people are falling for it.

 

[Nielk]

That comment kind of made me think what the jewish people were probably saying during the Holocaust. They willingly went to the ghetos (where we all know what later happened there). They trusted things wouldnt get too bad and would change. They tried and tried to work with those who were biased against them. They knew they were biased yet they kept trying to work with them instead of taking a strong stance and fighting the situation..they fought but in a complient way which didnt carry any power.. from that position they couldnt change a thing.

Was that a good move? should they have fought and really fought from the start and not have "given in" to what was going on and was wrong. Maybe things would of been different if they did early on as a group have riots in the streets.. before people, the general community were "brainwashed" against them. . I see our situation as alike, what we are doing and choose to support RIGHT NOW, will make a HUGE difference to what things will be like in the next 5 or 10- or 20 years. People can be brainwashed against us and this illness. Who is going to listen to psych patients who have imaginary complaints? We find advocacy hard now, but what then??? .

This contract Im seeing as a DEATH CONTRACT. It will end up being very bad for us.. people are going to die due to it as this illness when its severity gets played down more instead of things becoming better for us.. watered down definitions eg more people who should be being treated being viewed as psych patients and hence having major health issues, sometimes serious ones ignored (Im already an example of this.. things thou are about to get worst).

Other advocates of ours will be giving up and committing suicide (our advocates are a tired bunch and sick of fighting).. destroyed by where this illness has headed after all these years of effort they've put into things.. going backwards more. I personally believe its not going to be good going ahead with that contract and that people will die due to it.

Tania,

It's very interesting that you bring up the holocaust and how there was very little fight in people who mostly marched to their death. Some of them were my family members. I am a child of holocaust survivors and from a young age was very interested in hearing and reading all about it because it had touched my family. It was a tragic time in history and it left me very disturbed - trying to understand both; the actions of the Nazis and the inactions of the Jews. I could not understand how a whole group of people can suddenly turn so evil and try to exterminate a whole people just because they were born a certain religion. By the same token, I was also disturbed how seemingly naively, as sheep. they marched to their death.

I think that some didn't know what was awaiting them but, many did. They just didn't want to believe. Their mind could not comprehend that humans could perpetrate such an ugly crime. In retrospect, looking at it from hindsight and removed as I am, I wish that they did not act as helplessly. I wish there would have been more uprisings and freedom fighters.

I think that this family history somehow drives me into action now. If I see injustice, I am not complacent. You are right in stating that ultimately we are fighting for our lives here and the lives of future generations of ME patients. This is not just a political play and trying to vie for power. Ultimately, if the IOM is given the power to redefine our illness, given their history and given how little proper research we have had that show a biological/scientific biomarker, the end result will be disastrous. To think otherwise, in my opinion is to be very naive of the real situation.

 

[taniaaust1]

Another question I can't get out of my head is why is it that our organizations have to put out statements with spins in order to try to convince us to go along with the IOM process?

If they really felt that they have faith in the process why not just plainly say, we have faith in this prestigious institution that they will deliver a definition which is way better than the CCC? Why be willing to waste a million of our taxpayer's monies and 18 months in time, unless you feel strongly that they will come up with something much stronger and better than the CCC which our experts have adopted on September 23rd for free?

(two people are having a convo)

ME/CFS person: Please put more money into research, we arent getting much money put into ME/CFS

High up government person: We've put lots of money into that illness, look we spent years working on better definitions and put millions into doing that. So as you can see, we havent ignored ME/CFS but have spent lots of money on it.

 

[taniaaust1]

I agree with you that we are not organized. Should we give up though then? Each person can look at all the information out there for themselves and make a personal decision whether they want this to happen. I wish that we were organized. Part of the problem is that HHS and IOM is making sure we have no time to organize. Have you asked yourself why they are rushing this through.

It's true that some organizations have failed us. What should we do now though? Just sit back and let this happen. In my opinion the stakes are too high.

Much of our community is disillusioned by the whole thing around CFS, but obviously if they are rushing things throu as they know we carry power and know we could change things. They rush things throu as they fear us.

As individuals and as a community, we are actually stronger then we think. People need to think about what we've done in things like the chase competition and other competitions. How ME/CFS INDIVIDUALS worked together and achieved a big goal for ME/CFS. We achieved..

We could do it, we could change things as individuals who were working all well together. Maybe we wont this time but I hope sometime in the future we will, we need to keep trying. (We could do with forming some better, stronger orgs too which dont bow down to pressures).

 

[taniaaust1]

Nielk, Im so glad with your family history there I didnt offend you and that you can see the similarities too.

I could not understand how a whole group of people can suddenly turn so evil and try to exterminate a whole people just because they were born a certain religion

Its terribly scary how people can be brainwashed to think a certain way about others to such a degree. It really shows what peer pressure and what people are told affects people. Things like that truely make me fear just how bad our own positions may get. There's a spectrum to how bad can get and we'd end up somewhere along that line.

They just didn't want to believe. Their mind could not comprehend that humans could perpetrate such an ugly crime.

I think people who first get ME/CFS are in the same situation.. often unable to comprehend how uncaring others can be when it comes to this illness. Denial of the true situation of things also plays a huge part.. who when they first get sick believes they are going to stay sick? Who believes at first that many doctors will turn one away and not want to help? Who believes that if one gets too sick to cook and care for oneself, one may not be able to get help to do so? Who believes at first that govs work against those who have ME/CFS? Denial is huge.

Sadly I dont think there is nothing we can do about getting people who are in that denial of what is about to happen out of it. People I think naturally want to think the best of our world and of those in authority (otherwise the world becomes far more scary).

All we can do is try to educate those who are starting to question situations, on things which have happened before. History of ME/CFS, history of how whole communities can be turned against a group of people.

I think that this family history somehow drives me into action now. If I see injustice, I am not complacent.

I think it does often take horrible injustice to make many realise it exist, when one oneself has faced it or had a family member face it, its harder to shut ones eyes to it .. it does then drive one to then taking action and being unable to sit quietly by. Ive had so much unfairness already over how Ive been treated due to ME/CFS, its very hard for me to sit quietly by. It could be a life or death situation (if my home support was pulled if this illness was viewed as fake or something treated by ignoral, I wouldnt survive).

thanks for your post Im going to be quiet now at this thread as I dont want to dominate it.

 

[taniaaust1]

I've been doing what I can to motivate the patients in my support group to sign the cancellation petitions etc. I don't know what else I can do. Also, staying away won't improve anything. That's what the ME experts did during the meetings that came up with the name "chronic fatigue syndrome." Their refusal to participate did nothing to make it better. And their refusal to participate did not stopped the government from claiming that the meeting consisted of all experts.

I think you may have that wrong. If Im remember correctly, there was at least one ME expert they got to go on the board. sorry I cant remember now who but it is a well known ME expert. She (I think it was a she? I may thou be remembering that wrong) has made public statments saying she/he regrets she was on the panel and hence involved in the name change to CFS. (Can someone please rejog my memory who this person was?)

So anyway.. if my memory is serving me correctly, it was the same kind of situation which screwed things for us back then.. with ME expert(s) on that panel but things went ahead with the name change and we all know what happened due to that.

(now I will shut up, I couldnt allow an inaccuracy like that to stand).

 

[Andrew]

That comment kind of made me think what the jewish people were probably saying during the Holocaust. They willingly went to the ghetos (where we all know what later happened there). They trusted things wouldnt get too bad and would change. .

I don't see fighting at the meeting as being herded into a ghetto. But I do think your analogy fits what CAA is doing. They are touting the meeting as an opportunity to bridge cooperation, not a battlefield on which to fight for our lives.

 

[Andrew]

I think you may have that wrong. If Im remember correctly, there was at least one ME expert they got to go on the board. sorry I cant remember now who but it is a well known ME expert. She (I think it was a she? I may thou be remembering that wrong) has made public statments saying she/he regrets she was on the panel and hence involved in the name change to CFS. (Can someone please rejog my memory who this person was?)

So anyway.. if my memory is serving me correctly, it was the same kind of situation which screwed things for us back then.. with ME expert(s) on that panel but things went ahead with the name change and we all know what happened due to that.

(now I will shut up, I couldnt allow an inaccuracy like that to stand).

I'd like to hear comments on this too. I was going by what Byron Hyde said about the first meeting (which was not the Fukuda meeting). But, what you just said sounds familiar too. So I do hope someone chimes in.

 

[WillowJ]

Who is 'we'?

This is the problem in my opinion - we are not organised. Too many groups think they have the right to tell people what to do without actually organising, listening, empowering and most importantly representing, rather than telling.

I do agree with this as a general criticism.
fwiw, PANDORA did consult with patients. I don't know how many, but they did spend time listening.

 

[justinreilly]

I agree with you that we are not organized. Should we give up though then? Each person can look at all the information out there for themselves and make a personal decision whether they want this to happen. I wish that we were organized. Part of the problem is that HHS and IOM is making sure we have no time to organize. Have you asked yourself why they are rushing this through.

It's true that some organizations have failed us. What should we do now though? Just sit back and let this happen. In my opinion the stakes are too high.

I know many think that all these e-mails and/or phone call are counter productive. They are not! I hear from reliable sources that each piece of mail, each signature and each phone calls matters. Our congressional representatives have to listen to us. They have to read each piece of mail. Just send them a copy or link to the letter from the 35 experts in the field stating their opposition to this contract and ask your representative to look into this.

I totally agree, Gabby.

I think that the IoM contract is the most important advocacy issue I have ever seen, so now is the time to act and NOW is the time to ask or beg family, friends and contacts to help us. We need all the help we can get. I don't want to look back on this and have doubts that I could have done more to prevent or mitigate this disaster!

Gabby, I don't agree with your earlier point though. I submitted a list of nominations for the panel, because I feel that if it goes ahead, God forbid, then there will at least be some mitigation of this disaster. The experts can keep things on course and focused as much as possible on the facts, not the lies. They can also at least officially write a dissent that will be included in the report, I believe.

That said, I am focusing more effort on getting the whole thing cancelled.

 

[Nielk]

I totally agree, Gabby.

I think that the IoM contract is the most important advocacy issue I have ever seen, so now is the time to act and NOW is the time to ask or beg family, friends and contacts to help us. We need all the help we can get. I don't want to look back on this and have doubts that I could have done more to prevent or mitigate this disaster!

Gabby, I don't agree with your earlier point though. I submitted a list of nominations for the panel, because I feel that if it goes ahead, God forbid, then there will at least be some mitigation of this disaster. The experts can keep things on course and focused as much as possible on the facts, not the lies. They can also at least officially write a dissent that will be included in the report, I believe.

That said, I am focusing more effort on getting the whole thing cancelled.

I have been thinking a lot about this approach of fighting for cancellation of the contract while simultaneously submitting names for nominations. I can definitely see the value of this stand as justinreilly and others have taken. Like I have stated on Jennie Spotilla's blog "Which Paddle?", I respect her opinion but, I will personally take a different approach.

I have taken that approach with CFSAC, where I (along with many others) have criticized them time and time again on their actions and most often for their inaction. Yet, I have given testimony there and I am working on nominations to the committee for next year. The reasons I have taken a different stand on CFSAC as opposed to the IOM are:

CFSAC is just an advisory committee. Even if I don't like the outcome, they don't have much power to effect any change. I feel though that it is a good platform for us to voice our opinion and maybe with a lot of work something positive might result.

The IOM study on redefining the disease has a lot of power. It has the power of changing the face of this disease completely. In other words the stakes are very,very high. I do not believe that the way IOM is set up and the way they have been charged can ever result in something as good as the CCC or better. Even if we have a couple of good experts on the panel. I believe that they will choose a couple of experts that we will be satisfied with just to keep us quiet. I don't think that those 2 or 3 members will be able to make a dent. They will be able to claim though at the end that "see, we listened to you and we have your experts on the panel so you can't complain about the outcome'.

The main reason I oppose to work with them is because our 35 esteemed expert clinicians and researchers who have collectively seen thousands and thousands of patients and have worked on this for so many years have come out with the historical strong statement of their disapproval of this action.

justinreilly said:

The experts can keep things on course and focused as much as possible on the facts, not the lies. They can also at least officially write a dissent that will be included in the report, I believe.

I am not sure what an official dissent would accomplish after the fact. The damage would have been done already.
The 35 have written an preemptive dissent in their open letter.