“If patient advocates sit on the committee, they will be played. The government will then be able to say the patient sector was represented in the committee’s actions and the outcome of the work.”—John Herd, veteran patient advocate, October 10, 2013
The patient community is frustrated by persistent statements of a small minority of patients/advocates to the effect that the IOM contract is going to become reality no matter what we do. We are being sold the illusion that nothing will make a difference. Might as well just give up, folks. Really? Not! Not at all, in fact. It’s a dangerous, but potentially effective technique: You just keep repeating a statement over and over and eventually it will stick. It’s effective, that’s for sure. Just look at the number of people in this country who believe that Obama was born in Kenya or that Obamacare will create death panels. There! Very effective to repeat these falsehoods. The danger in the IOM situation lies in the potential to demoralize folks when what we need is to fight more than ever.
Conceding that the IOM study will proceed would be to negotiate like Obama used to do until very recently. And how well has that worked for him?! It would mean giving up our position entirely to be left with no leverage at all and without having received any concessions from the government, e.g., about the IOM committee members, the rigor of the study, avoiding a GWI-like disaster, etc. To remind everybody, the GWI IOM committee changed the name “Gulf War Illness” to the unrecognizable and offensive name “Chronic Multi-Symptom Illness,” a name that could not be less descriptive or more all-inclusive. The “treatments” the IOM committee report recommended for GWI—a physical illness—are antidepressants, Cognitive-Behavioral Therapy and Graded-Exercise Therapy. The report also suggested the same clinical interventions for “ME/CFS.”
If something is morally wrong, one needs, as a matter of principal, to oppose it even if the chances of changing it are marginal (and I am not saying they are marginal here). Of course, one would go to plan B (trying to have a say about committee members to be appointed, trying to affect the outcome of the study, etc.) if plan A (opposing the study tooth and nail) falls through. We are not faced with a choice between plan A or plan B right now. Going with plan A does not, by any means, foreclose plan B here.
What do we have to lose by opposing the IOM contract unflinchingly? Not a thing. In fact, we may succeed and the contract may get rescinded! After all, Secretary Sebelius has not even responded to the open expert letter yet. And if you think about it, proceeding with the contract after our experts recommended abandoning it, really is not a reasonable route to take for her given that about $1 million of tax-payer money would be wasted when we’ve been told time and time again that there is no money for bio-medical research into the disease and that we are in the middle of a government shutdown and sequester. But since the government is not known to make rational or humane decisions when it comes to ME, it is indeed possible that HHS will decide to just push the IOM study through. So, let’s assume for a minute that that will happen. Surrendering in this battle still would make absolutely no sense. If we roll over easily now, it will signal that the IOM, for HHS, can throw us under the bus like they did with GWI patients. Our vets are a group that basically has the entire country’s support. Most people, even those opposed to the wars, want to see our vets treated decently. And yet, GWI patients got a shockingly raw deal from the IOM. ME patients are very likely to be treated even more abysmally.
The stronger our opposition now, the more we will show that we are not going to take any hack job lying down and that the IOM will not get away with a GWI-type outcome. Putting up a fight now will put us in a stronger position in the future. We need to fight every step of the way. Fighting costs us nothing. In fact it gains us strength and bargaining power down the road. Make no mistake: Fighting now WILL affect the outcome either way. As a matter of integrity and as a matter of survival, we need to take a principled approach. And that means not accepting the IOM contract as a done deal.
Jennie Spotila recently “confirm[ed] through multiple sources that the IOM has reached out to multiple ME/CFS organizations for nominations to the clinical case definition committee” and that those nominations were due on October 11, 2013. There have been rumors that certain patient organizations or its members contacted some experts as well as a few advocates and patients for their input regarding those nominations. Could it be that those rumors are indeed true? If so, this would certainly seem like a major betrayal given the clearly stated desire of the vast majority of the experts, patients and advocates to abandon the IOM efforts and to proceed with the CCC, as suggested by the experts. I guess we will probably find out in the near future who was involved in soliciting nominations for the IOM committee. I just hope that patients will not have reason to be shocked and disappointed to learn that their favorite ME organization or advocate has worked behind their backs against their stated and obvious interests. I really do.
And what’s with this lightning speed in obtaining nominations, less than three weeks after the IOM contract was announced on September 23, 2013? Nothing the government does, even when outsourced, like here to the IOM, ever happens fast. Especially in times of a government shutdown. Call me paranoid, but this really smells like somebody is determined to push this through as quickly as humanly possible in light of the overwhelming experts’, patients’ and advocates’ opposition before any real counter movement can be formed. And if that is the case, it begs the questions why. And what a revolting approach to exploit the fact that we are too sick to react quickly.
Jennie also lets us know that “the public will be given twenty days to comment on the provisional appointment list, although [she] do[es] not know when that list will be posted.” So, we will get a chance for input after the fact. How very generous! Is it just me or does anybody else have any questions about why the public was not even informed that this was going on? There has been zero transparency with respect to the nomination process or even just the fact that nominations were being sought. The latter did leak, but we did not get any details and definitely got nothing from any official source. Curiously, we were given this information through Jennie on the day of the deadline, October 11, 2013. Why all this effort to keep the main stakeholders—the patients—in the dark?
I guess we shouldn’t be too surprised given how the government has gone about the whole IOM situation from the start. Even Jennie admits, “I am insulted by how [the IOM study] was created in secret and concealed not just from advocates, but from all but one voting member of the CFSAC. The way HHS has treated the advocacy community, and failed to show the 35 experts even the basic courtesy of an acknowledgement of their letter, is simply outrageous.” You’ve got to give the HHS credit for one thing: They are consistent in their complete lack of respect for patients and experts. The disdain they have for us is clearly palpable.
Now about Jennie’s take on the matter. She says, “if the canoe is pointed at our goal of the right clinical definition for ME/CFS, how do we coordinate the paddling?” Clearly, if the IOM contract stays in place, the canoe is headed for the Niagara Falls. Grabbing a paddle by getting involved in the IOM process is only going to lend credibility to a sham exercise designed to burry ME even further for decades to come. By paddling, we would give the impression that we had a chance of avoiding the drop of 173 feet and being annihilated. The IOM canoe is doomed and that’s why patients shouldn’t and aren’t getting in.
Ok, so the government has never rescinded an IOM contract in the past. “We’ve always done it this way” does not get very close to convincing me. Has there ever been a situation where about $1 million dollars are going to be wasted on an outcome that has the overwhelming potential of leaving patients much worse off? I don’t know the answer for sure, but I would bet some serious money on “no.” And to expect the patient community to be understanding of the fact that the government puts its relationship with the National Academies above the wellbeing of patients who have been, by HHS, disenfranchised, ridiculed, neglected and victimized for decades is peculiar. How about the “politically loaded action” of awarding an expensive contract that the patient community clearly doesn’t want nor need? There seems to be a total acceptance by a few of the fact that the patients are ALWAYS the last group whose interest is being taken into account. Why is that not objectionable to everybody?
According to one of Jennie’s “highly placed source at HHS, … the government will not accept a definition without their own thorough assessment, if not influence [because] HHS will want to get its hands on any definition before accepting it.” This is exactly what’s going on, but why be so understanding about it? Given that HHS has no expertise in the ME area, it is outrageous that it wants to influence the disease definition and “get it’s hands” on it. Plus, this is completely inconsistent with Secretary Sebelius’s letting us know, through CFASC DFO Lee, that the definition must come from the medical community, not HHS. I guess Sebelius didn’t really mean it then.
I am glad that Jennie doesn’t just want to throw in the towel and stay out of it altogether. I agree with her on this point. Getting involved is a matter of conscience. But even Jennie does not “have confidence that [she] can have meaningful influence over the panel selection or how it does its work.” To be really clear, unlike Jennie, I do believe that my choice not to grab a paddle or even get into the IOM canoe—by fighting the IOM process altogether instead of merely trying to influence the IOM process—is better. I do believe that opposing the IOM contract and lobbying for the acceptance of the Canadian Consensus Criteria (CCC) is morally superior to giving up and putting our fate into the hands of the IOM. And I do believe that there is absolutely a real chance of stopping the IOM study from going forward. If I didn’t, I wouldn’t have run my health into the ground over the last two weeks trying to stop the IOM contract. If I felt either choice—to fight proceeding with the IOM study or merely to try and influence its outcome—were equally good or bad, I would have just enjoyed my family and my effective medical treatment.
PS: After getting all this this out of my system, I feel the need to say the following. I do not enjoy disagreeing with people. I struggled with the decision to explain why, in my opinion, Dr. Bateman’s change of position regarding the IOM contract vs. the adoption of the CCC, as recommended by our experts, was misguided. It was hard for me because of her many contributions and her dedication to the patients over many years. But her changing teams after being prompted by Suzanne Vernon was very damaging to the patient community and, at the end of the day, if I want to be an effective advocate with my integrity intact, I need to make it about the issues and not about the people involved.
I do not have too many sleepless nights over calling out officials, government or private. They get paid for what they do and if it’s against the interests of the patient community, which it typically is with ME, they need to hear about it. Suzanne Vernon’s actions and positions are so very objectionable to me that speaking my mind about them does not cause me any distress whatsoever. The fact that I have no ambitions of cozying up to people who are perceived, sometimes just by themselves, as influential is helpful.
Other patients are a whole different story for me though. Stress is so very bad for us and I make it a point to try and be gentle with fellow patients. However, what I said about Dr. Bateman holds true here as well. Trying to get along cannot trump discussing the issues or else there is no point to any of it. It is in this spirit that I wrote this. I hope both Jennie—whose intellect and writing skills I respect very much—and other patients will understand that this is in no way personal, even though our opinions on this particular issue couldn’t be more conflicting.
Something I find very disturbing is that a higher-up in the IOM has a big stake in the disability insurance industry. I can’t find the post on Phoenix Rising now, but there is a huge conflict of interest there.
Thank you, Not-All-In-My-Head.
Once again this blog has laid bare the truth of this situation. It is there for all to see. Even with the government shut-down, it seems the government and IOM are moving with uncharacteristic speed to redefine ME/CFS, and our so-called “patient” organizations are helping them.
Some patients are saying we need to accept that the IOM contract is fact and cooperate with the IOM by trying to get some people on the panel who really do know M.E. That is exactly what the Gulf War Illness patients did, and look what it got them! Their illness has been renamed “Chronic Multisymptom Illness” and their doctors are being told to give them antidepressants and behavioral therapy. Is this what M.E. patients want too? If it is, the way to get it is to accept the IOM and follow the examples of the CAA and PANDORA.
” What do we have to lose by opposing the IOM contract unflinchingly? Not a thing. In fact, we may succeed and the contract may get rescinded!”
This is the other route. We can oppose the IOM contract completely. Will the government, the CAA and PANDORA back off? We don’t know. We have never done this. What we do know is that the deck is stacked and the end is certain if the IOM contract goes forward. There is no compromise. The IOM will bury us for another 30 years, with the assistance of the CAA/PANDORA/WPI.
What have we got to lose?
Look what the IOM did to the Gulf War Illness–unbelievable–yet it was done! NEXT up — ME/CFS . . . Believe it — that seems to be the mandate and mindset of what ‘they hope to do’ for ME/CFS. Somebody with honesty and integrity needs to blow the whistle on what is going on here–and expose the years of wrong-doing !! ARE we kidding—CBT and GET and anti-depressants; get real!!!
Thanks for keeping us updated Jeanette. Are they trying to follow in the UK’s footsteps with CBT and GET where medical treatment is a dream? Adopting this anywhere else in the world is not going to help. We don’t need a repetition of what is happening here. Sorry about the effect fighting the IOM contract is having on your health. I hope the Ampligen is helping.
Is it just me, or does anyone else have a hunch that there has been no response to the 34 Experts letter because there is not an acknowledgement that these are, in fact, experts? Even more discouraging, I’m not convinced that Sebelius even realizes the magnitude of what is sitting on her desk or in her inbox, that she is so far removed from even a rudimentary understanding of the disease and it’s issues, that this is a mosquito bite annoyance to her.
Maybe I’m overly cynical after all these years. But I feel like we’re screaming our heads off in a vacuum.
Jennie’s canoe metaphor brought to mind a different image for me, an image of everyone piling into a canoe on the Colorado river, just north of Lake Powell, only to find out a mile or two later that they were in the middle of the desert with no current to take them anywhere and an overwhelming maze of dead ends fed only by the occasional flash flood and all of the associated destruction. I think I’d rather stay on shore and hope to come across a few friendly natives in previously unexplored regions rather that finding myself in the company of a group of “experts” surrounded by canyon walls too vertical to escape and that stand silent except for the echos of my own desperate pleas for help. I think that’s exactly the point of the IOM contract.
As for Dr. Bateman’s change of position, I don’t find it surprising in the least. What I found surprising, given Suzanne Vernon’s and Beth Unger’s support of the IOM was that she ever signed the original letter opposing the IOM in the first place. We forget that the “expert’s” goals and the patient’s goals are not the same at our own peril.
It seems absolutely evident that the influence of psychiatrists involved in the disability insurance industry are linked with the Wessely School psychiatrists and perhaps Professor (now Sir – thanks to his ‘services’ to ‘science’ and the veterans, would you believe. Wish that Laurel could find out more about this – or is there more info on Phoenix Rising? Unger has been quoted as saying that the prescription of exercise is – ‘non-negotiable’, and the research project, in rejecting a 2-day exercise trial, will support the idea that we are just ‘deconditioned’. This all is extremely discouraging.
Actually, Nancy, The CDC and others don’t seem to have noticed that the PACE trial by the psychiatrists falsifies the ‘theory’ that ME people are deconditioned. After 52 weeks of GET ‘training’ their walking distance improved by an average of only 67 metres and they could still walk less than patients with heart failure and those awaiting lung transplants. Later the authors rubbished the value of the 6 minute walking test that produced these results. This is after they claimed that it showed the effectiveness of GET, since this treatment produced the best results (such as they are). Looks like the CDC only bought spin part of the report.
Sorry about slight incoherence in comment above – What I meant is that the influence of psychiatrists of the Wessely School, some of whom have been linked to the disability insurance industry (see MEAction, articles by Professor Malcolm Hooper) is very much at work here, and it seems that Unger is being influenced by them, and that there is complete determination to create the situation similar to that in the UK, and to what happened to the Gulf War Veterans. We need to understand how these people gain and operate their influence.
Laurel was referring to the donation of $2M for the endowed chair of executive officer by the CEO of WellPoint who is an IoM member. The donation is featured on the front webpage of IOM.edu. WellPoint was chosen as one of the ten worst insurers by what I think is now justice.org, formerly American Trial Lawyers Association. A conflict of interest there since they are plaintiffs lawyers, but they may well have a valid point.
I agree with your outrage, Jeanette. Lots of really great stuff in this post. They are soliciting CAA for nominations in secret. They must be doing this because they know CAA represents CDC and not patients. This is already a sham.
I submitted a quickly drawn up list of nominations and those who must not be on the panel at the last minute when I by chance saw the rumor that IoM were soliciting nominations due the next day. That doesn’t mean I am not fighting this kangaroo committee report. Im even sicker about it than I was before. Thank you to everyone who is fighting this!!
correction| here is the webpage (it is not the front page of iom.edu as i had said above) describing the $2M gift
Jennie Spotila says in the comments to her latest blogpost that he is no longer Chair or CEO of WellPoint.
The deconditioning is due to the inability of the body to do exercise/carry on activity BECAUSE of this serious illness–the deconditioning is as a result of the underlying disease itself rendering us without energy, etc., etc.. The body has a biological energy problem–mitochondria is involved–this is serious–and essential to life / ‘living’ life !!
To draw a parallel–how can you get a car to run if the gas tank is on empty ?? WON’T happen. Car sits there. Soooo, is the answer to that to try to make the car run without gas? Again–WON’T happen–NOT possible!
AND the car won’t run / is INcapable of running until it is filled up with gas!! Sooo—if the car is NOT filled up with gas (its energy) day after day and year after year–AND it cannot manufacture the gas itself — it will NOT run, day after day and year after year–can’t run on an empty gas tank–can’t fill up the tank itself!!
AND, similarly, until the biological problems with your bodies are fixed the body won’t run, such that we are able to live life and be active–the body is EMPTY of energy–and every system and cell in our body requires energy! Over-simplification here–but there it is.
I was formerly very active and very fit–then was struck with this horrid disease!! I try to push to do slow short neighbourhood walks a few times a week ‘if’ possible and cannot always do this–and this has NOT built up to longer walks over seven years–GET is for patients with other diseases where it will help; certainly NOT with ME/CFS and PEM!!! If we push to do more–symptoms are up–we FEEL physically worse–and PEM is there.
Is anybody hearing us, in the mix with all that this disease entails, when we say that we feel verrrry UNWELL ALL THE TIME — EVERY DAY — YEAR after YEAR?? Some are (hearing us)–others just want this to be shelved and flushed away for their own individual and collective agendas. HOW DECEITFUL . . . supposedly acting on our behalf.
Big money–big insurance companies–big egoes–big liars–big cover-ups; this is the reality so I am calling a spade a spade. The insurance rehabilitation people have tried pushing ME/CFS patients to go to physio three times a week–are you kidding me!! As I could literally only push out of the house once a week–and that is a PUSH–with other medical appts in the mix–I’d manage to get to physio ONCE about every 3 or 4 weeks.
There is NO building up gradually FOR US with GET–because there is NO fuel running the body–day after day after day!! THEY know that–they DON’T care!!! WHY are ‘they’ getting away with the massacre of human lives??!!!! Rehabilitation does NOT work with this debilitating disease because our depleted energy does not get a fill up EVER. We need the research answers and a scientific FIX.
Welllllllll, lucky for us that research with the possibility of Retrovirus XMRV surfaceD in the fall of 2009– because along with that came much long-awaited attention and NEW research to the ‘closeted’ debilitating biological disease of ME/CFS—and the result has been MORE research AND more EVIDENCE of a serious biological disease. BUT four years later, in the fall of 2013 where we are at now, the powers that be are HARD AT WORK TRYING TO BURY THIS BIOLOGICAL REASEARCH and US–shove things back into the closet!!!
It is NOT going to work–there is too much BIOLOGICAL EVIDENCE FOR THAT–and more coming!!!
I respectully hope that these people do NOT become stricken with ME/CFS and have their lives stolen in chronic daily debilitating illness–and IF they should–I do hope that they will be listened to in their demands for HELP!!!
Right on, Jeannette! You’re principled and you’re a fighter. Great! I’m all for it and I, too, can’t stand the maneuvering about all of this, which affects all of us who suffer from ME/CFS. Others are bandying this about and ignoring those of us who live with this disease every day and could in our sleep list the symptoms and give a “case definition.”
It is maddening what’s happening as you correctly analyze.
We do have to be resolute and refute the IOM and those who are promoting it, and we certainly do not want the same outcome as those with GWI. What a travesty! And that’s about veterans.
At this point, I surely don’t think highly of a government, which would deny funds to families of dead soldiers. So, therefore, if that’s how these families are treated, is there really any concern about anyone who is ill and is seen to be powerless?
I wish we could do what ACT-UP did or do some protest in a concerted, unified way.
Thank you Jeannette for an excellent article/write up about the current situation. I was meditating this afternoon but thoughts kept escaping to the IOM, the definition, the DHHS, our advocate organization, the CAA and the fact that there isn’t much hope left for the severely ill. If the contract is going forward we will have to wait at least 2 years before the HHS is prepared to put money into CFS/ME. Not before they have a definition.
What surprised me was that I came to the conclusion that having been sold out by our own advocacy organization scares me more and has greater impact than the IOM contract has. It means that we, the severely ill, are not worth fighting for. If we were worthy, they would have understood that we can not wait much longer, that we need answers and treatment using the CCC now, not in 2 or 3 years. The would have supported the specialists in their point of view and would worked hard to get that point across. Instead they gave up.
It’s very very scary when people give up on you. It means to me, they also think there’s no hope left for the 25% group, lets go and save the 75% that is left!
Still, whenever I try to start a discussion with one of them the answer is always, no no, don’t give up hope! A solution is right around the corner, just you wait and see! I’m a realist. And advocacy organizations and independent advocates who all sold out to the IOM and CAA, actions speak louder than words! So don’t tell me a solution is right around the corner, because it isn’t. And stop telling the world that something needs to be done about all the suicides. They are nothing but words, words without meaning. You are not prepared to do something and stand shoulder to shoulder with us. People loose hope and see no other alternative because the one that was there, the CCC is being taken away or thrown out with the bathwater. It scares me, no hope is making the coming year(s) look bleak.
I don’t think that nominating people to the panel works in opposition to doing everything we can to get it canceled. Because if we don’t get it canceled, then we have people on the inside that can push for the CCC. And if we don’t get the CCC, then we can say the solution is unacceptable. Another possibility is if the IOM comes up with something very close to the CCC, and the absent experts vote on this between themselves. and then let the advocates there know to support it. But other than that, accept no compromise. Remember, no matter what they come up with, the experts don’t have to use it. And they have said as much.
BTW, I really don’t expect much good from the meeting. I would not even be surprised if they try to rename ME/CFS to multi-symptom syndrome and lump it in with GWS. The only reason I’m in favor of participating is I think we have to try. Maybe the press will be there. Who knows.
i don’t normally respond to comments anymore because I don’t have it in me, although i very much welcome them.
i think the misconception here is that people on the panel who are on the patients’ side would be able to affect the outcome. they might put a few real experts or a patient on, but not enough to have a any real say. it’s a very old political trick to involve a few people with credibility to give the whole sham process credibility. … do you remember how gailen marshall tried to silence eileen holdermann, our patient representative, at the last CFSAC meeting? he just told her she was out of order when she wanted to speak. that’s how easy it is: use robert’s rules of order.
and the IOM will not come up with anything remotely resembling the CCC. i realize that some people are hoping for that. it won’t happen. once the hack job of the IOM is done, everybody will realize it. but by then, it’s too late. people need to wake up now.
We have to remember Sebelius denied a 12 year old girl a lung transplant, until there was an outcry from the people, so she will move with enough pressure. Greed, power, and ego are running this show. We need to organize a list of patients, maybe multiple patient list, ME/CFS, and Gulf War Illness, the larger the group the more power. This is not acceptable, but they know our ability to fight is minimal. We can call everyday, write, but I don’t think they care. We need to start local meetings in each state, call list of people with ME, CFS, and make the most of our numbers. We have just let this organization run over us for over a decade, why are we paying them?
Thanks again, Jeannette! My thoughts and feelings exactly!
NIH/CDC/CAA threw us under the bus when they changed the name to chronic fatigue syndrome some +-25 years ago. Now that enough biomedical research proving this to be a physical disease has accumulated despite all the underhanded contrarianism, they want to do it again. Their unstated motto seems to be “When our previous lies and disinformation stop working, we’ll come up with some new ones.”
It’s perfectly obvious to me that this is an UNUM and the other disability insurers sponsored move. They are terrified that FDA has recognized this illness as physical and seriously debilitating. This is damage control for insurance companies and possibly for Medicare as well.
What’s different this time is the internet, the availability of online petitions and near-instant notification of this kind of malfeasance. We are refusing to be buried again.
This is how they did it in the UK in 2007: (UK contracted with UNUM to do disability assessments for their Dept. of Works and Pensions — the equivalent of SSA in the US. Basically, UNUM taught UK how to deny disability claims and treatments. Part of the strategy is/was to claim all tests and treatments to be “experimental” and thus not covered by any kind of insurance.)
I did wonder, if they think that as Wessley and his band of psychiatrists have had such a stranglehold here for so long, they think they can get away with the same thing there? As for Wessley, the only thing that he deserves, is to be tried for crimes against very sick people. At the last appointment with my neurologist, he came up with the same tired line of, ‘not much is known about ME and doctors who say they can help are charlatans who want to take your money.’ And then he recommended CBT/GET and antidepressants! His bad attitude and contempt for ME patients is sickening. Guess it’s ok for all of them to profit out of our suffering then. I agree giving up is not an option!
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Pandora has issued a statement on their position on the request of the IOM for nominations. They talked about what happened behind the scenes while they were in Washington
Of course, Pandora’s information needs to be verified. There is evidence to rebut some aspects of thier statement. Their statement concerning 1.The legally binding contract cannot be stopped is inherently wrong.
You can seek injunctive relief,
Presidential decision can rescind the contract,
Government Procurement in Times of Fiscal Uncertainty, the government may terminate or end a contract at any time whether it is for the convenience of the government https://tinyurl.com/l3oubfs
So statement 1. is misleading and false.
I am on it, Ecoclimber. Had a flight and infusion today. Now first food of the day. But I am working on it.
We’re up against the whole Washington political establishment. Kathleen Sibelius is on the Cabinet, appointed by President Obama. She is going to do what the administration wants done, and nothing much in these days of sequestration and a dysfunctional Congress, with forces inside it who not only want to stop funding federal social programs — including for medical research — they want to massively cut funding that’s already budgeted.
Yes, the only that has access and can help our cause is Bob Miller who gained national exposure and commitments by the White House concerning ME/CFS. I have not heard a word from him which is very unusual considering what is at stake
I go back and forth with thoughts of, “Are we so afraid of change, that we say NO to everything that we are not completly comfortable with.” To “I don’t trust them to do the right thing.” I don’t know if anybody else are struggling with this? What if this time they really have our best interest at heart? I don’t want to cut off my nose to spite my face hear.
Wellll—let’s ask then — What did they just do to the Gulf War Vets . . . ??
It is ‘our hope / our dreams’ that takes us to WHAT if—as in WHAT if THIS time around MAYBE they really do have our best interests at heart. If that were the reality–we would KNOW that THIS time around they do have our best interests at heart–and there would be clarity, honesty and transparency–there is NONE of that–quite the contrary–that is why we have DIRE concerns.
In other words, it would be obvious–a ‘KNOWN’–we wouldn’t have to be ‘placed’ in the ambiguity of ‘hope’ wondering IF. Purely basing this ‘WHAT if’ speculation on ‘hope’ is NOT accepting the DIRE reality of what we are dealing with.
They haven’t wanted to touch ME/CFS. They are probably out to screw us, that was evident with the denial of the second day Stress Test.
Found this link and excerpt below–from Dr. Lucinda Bateman’s presentation–speaking to a ‘day two’ re exercise–ME/CFS. (I have also posted this on Jennie Spotila’s blog.)
“This is another test with this group and a set of healthy controls, together with a retest, and it showed that it’s very difficult for chronic fatigue syndrome patients to reproduce the same amount of exercise two days in a row. That might help explain post-exertional delays. Something is damaged, or recalibrating, or recovering. There’s something going on in day two after a vigorous exercise.”
AND this speaks loudly to what is going on in disallowing Day 2 of the exercise testing–they do NOT want the results seen.
P.S. CCC has identified a hallmark of Post-Exertional-Malaise in persons with ME/CFS that is unique to ME/CFS–and ‘ the powers ‘in charge’ ‘ are refusing this to be evidenced by only allowing the first day of exercise; and NOT day two–which they know will NOT show PEM. How very convenient . . . how very deceitful. Their hypothesis/mandate appears glaringly to be to ‘disprove’ by disregarding and disallowing the facts–then putting their own incorrect spin on it. Whose side are they on ?? Little wonder; their actions show it.
Actions speak louder than words!!!
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