CRITICAL MASS IS NEEDED AGAINST THE IOM CONTRACT!

Eco,

I agree with everything that you say. We need action now...but, we need someone to direct us as to what exactly we need to do. I too am working on the back channels with some patient advocates. The problem is that we need ONE unified front.

At the one end we have clinicians and researchers who have concerns. There are different groups of advocates trying to work on different issues. As far as I know, we could be double or triple tasking..or worse, some fronts are not even tackled.

It would be great if we had a serious group who could take the lead and direct everyone. This is where the CAA could have stepped up and shown us what kind of leaders they really are but, they have outrageously failed us!

I wonder what stand they would have taken, had they been in their earlier days when they were true patient advocates and were not involved in research.

Thid lack of leadership, I believe is our greatest problem right now.

 

I think some planning is order, not just jumping in to make something happen. There are good ways and bad ways of going about this.

I found this great video on How To Protest Effectively by Naomi Wolf. She's studied past protests and why they did or didn't work. Some material is more relevant to us than others, but there is much there to learn. Maybe this lady could be a mentor for us or something.

A central website or blog for Stopping The IOM Contract is probably a must. I suggest using Wordpress as the platform. Our videos, photos and reports could be posted there. It could be a central contact for the media. People from various groups working on this could all identify themselves via this website, so they could meet together backchannel and plan things. Patients could sign up for email alerts and send out protest emails with one click via this website.

DHSS, the CAA and the IOM could all be protest targets.

These are just a few ideas I thought of (don't want to say more on public forum). So check out the video and see if it doesn't spark some creative juices.

 

I over did it today and can hardly move. so excuse any blah blah blah in this post.

I think that some how contacting Gulf War advocates would be a great start. Also any news people who have written about the IOM and Gulf war illness issue.

If someone could write a letter I could send it out to news agencies but their would have to be a contact person and I can't be that contact person because of my brain fog If I had to talk to anyone about this issue I would sound like an idiot. Just read my ramblings in this post.

Example the http://www.usatoday.com/story/natio...stitute-of-medicine-gulf-war-illness/2458745/ written in USAtoday. If we could get someone who is good at writing letters we could write to Kelly Kennedy @KellySKennedy, USA TODAY and tell them about how the government is now trying to do what they did to the Gulf war vets by getting our disease defined by IOM. And also add the letter from the doctors and researchers who opposed this idea.

I was really shocked how much alike our issues are. And in the USA today article a lot of things sound just like what they are doing to us.

The Research Advisory Committee was formed after Congress found VA had focused most, if not all, of its attention on psychiatric causes of the illness, which affects about 250,000 veterans of the 1991 Persian Gulf War.

sounds familiar to me.

Last month, committee members accused VA of an attempted gutting of their group, claiming that half of their members were to be replaced and that their chairman, James Binns, was being pushed out.

This sounds like what is happening on the CFSAC committee. Didn't someone get threatened or something like that? And they were going to look into it and we haven't heard anything back about it.

 

Unfortunately, Critical Mass is needed in a narrow timeframe of probably within the next three - four weeks. Quite simply, we need the numbers!

To the Feds, those that write letters or make phone calls represent a statistical sample of the number of patients opposing or supporting a position. CAA can categorically state that they have (x) thousand patient members supporting their position or platform. They have the strategic advantage. We can't present that number of patients to the Feds unless we unite in a coalition of patient communities across numerous disease groups. I listed one earlier a Lyme organization. This has to be a grass roots effort.

Here is another organization that should be an easy group for solicitation. Read the 162 comments from the patients. Notice Bateman's name.

Fibro Doctors Chose Pfizer Over You

Eco

 

Coalition of patient communities - ok, now it's starting to sink in.

Here is what we can do right here on PR to start. First off, we need a "press room". A press room is simply a prominent main page on the website, which is dedicated to press releases and has a contact name and info in case the press wants to contact us. It makes it easy for a journalist to write about us with the correct information.

We, PR, need to release our own statement similar to the doctor's statement. We can say that we also represent X number of thousands of patients, and that we agree with the 35 34 doctors and not the CAA and why. The press release can be posted on our website, but it can also be sent to targeted reporters who have helped us before, the DHHS, etc.

We can also press release the other patient orgs, and then encourage them to set up their own press rooms and make their own press releases to the same places. This takes power away from the CAA as being "our representative".

I think this is very doable, and in a short period of time; and most importantly, it should have an impact. This is a technique that, once set up, can be used over and over again as needed.

If the PR board wanted to get an idea if the majority of the members supported their position, they could always do a quick poll of the members. You don't have to show the results publicly.

You can do a google search for more detailed info on setting up a good press room.

 

Critical mass will not occur without organising the community first.

Secondly, merely telling us what we are supposed to do or think or support will not work either, otherwise you are falling into the same trap as CAA, by acting first without listening. You cannot build support without actually listening and actively representing the needs of others, not your own beliefs.

Even if the project goes ahead and is a disaster, if there is overwhelming support from the community to reject their conclusions, then something might be done.

 

The press room idea was one I was scheduled to blog on but never did. I think it needs to be independent of sites like Phoenix, but used by all sites/advocacy organizations, including Phoenix. That doesn't mean that a pilot project cannot be started here.

I originally came up with this idea as a counter to spin from public relations organizations like the Science Media Center.I envision it as a neuroimmune disease press room (not that I used the press room terminology) and we can get it promoted widely. This is where I started thinking about disease coalitions. Not to lobby for disease specific things, but to lobby, promote and inform on key common issues.

Yes, we need our own statements, with as many signatures as possible. Such a statement needs to be short and focused on the main issue, so that many will be encouraged to sign it. If its too long and complicated, then many will be happy with part of it, and not others, and so not sign. For other ideas, if any, we need other statements.

 

A major demonstration could attract media attention and that IS something we need. I once demonstrated myself and that did draw attention even thou I was one lone person .. I was amazed by what attention that got (security actually was called and they went and got someone high up at the place for me to speak too).

At the moment ME/CFS patients do not get seen or do not make enough fuss and hence we keep going invisible.. Im SURE "they" do not want us protesting.

 

I remember Tania when you had your one woman demonstration. Thanks again for doing that! I think that the visual of seeing physical people is much more effective than mere letters, although that is crucially needed too. Having a group of demonstrators with some in wheelchairs can be I think most effective.

I watched the video provided by caledonia above -

I found this great video on How To Protest Effectively by Naomi Wolf.

It's an informative video and it reinforced my opinion how these peaceful demonstrations have historically effected change throughout the world.

It is true that we probably cannot organize a very large group with just ME patients but I don't think that that should be a worry. The issue that is most critical right now, the IOM project, is unique to us right now. Today, with the ability of video taking, we can make this very visible,

See the video of Rivka's demonstration in 2011. http://cfspatientadvocate.blogspot.com/2011/05/hhs-demonstration-may-10-2011.html

It is true as alex3619 stated that the US clearly does not care about the disabled but, they do care about their image.
If a group of visible disabled citizens demonstrate the injustices done to them and then have the video sent to all media, I think that might get their attention.

The pressroom idea that caledonia mentioned could be great and powerful. The problem is what how do we work it. Do we take a majority of opinions and have them stand for us? Do we appoint a specific group to be our spokespeople? We will never get everyone to agree on any topic. We could be a very effective voice though. We probably need and advocacy leadership here.

 

I wouldn't go so far as to claim the US, nor people within the US government, do not care about the disabled. However there are factions that don't, at least in the sense of understanding the issues and wanting to help. (Edit: I thought this point should be clarified.)Those pushing hardest for austerity are likely, in my view, to be the ones who care least. However they spin it as saving money now so we can afford to help later.

I think most people are good people given half a chance. Many of those can do really good or heroic things under the right circumstances. I think most of those doing us harm may be good people. There is a natural tendency to think those doing bad things are evil or whatever, but mistaken beliefs, ideas and opinions can do damage even with good intentions. I think there is even a Biblical or at least Christian saying about that, the road to Hell ...

Most of those doing the wrong thing probably think they are doing the right thing, making the hard decisions so that things will be better for all. Not all of them, but most. That is the dilemma. Most of our opposition are not evil, they just have interests opposed to ours, and ideas about how to fix things that either do not work or are dangerous.

Ignorance is a bigger enemy than evil.

 

They are all great ideas! But at the momnet what we need is thousands of signatures from patients, families, loved ones, friends to RESCIND the IOM contract. We are not getting nearly enough. That is why I suggest a simple campaign to solicit other groups to add their names to our petition. We need Critical Mass in a very short time to overcome support from the CAA membeship rosters.

If the IOM contract redefines ME/CFS as CMI, then that will be the treatment modality option for ME/CFS patients.

It would also be best to have this thread and other similar threads linked to a more visible presence on PR. Most visitors and members do not necessarily check the advocacy and fund raising section on PR. A sticky for the next 3 weeks at the head of each forum heading would be great.

At any rate, this is my last posting as I will be leaving PR. I have other obligations and commitments that I need to attend to. It's been an interesting five years. I wish everyone well!

Petitions site:​

http://forums.phoenixrising.me/index.php?threads/one-petition-one-thank-you-one-voting-competition-get-involved.25648/#post-393212
Thanks Bob!

Eco.

Addendum:
The links were in other threads and on various blogsites. No, I'm not upset with anyone here. I have pressing outside obligations that I need to focus on. My emphasis was to simply have you ask other patient communities to sign our petitions supporting our ME/CFS researchers. I didn't have the bandwidth to handle it myself and we were not reaching Critical Mass in the amount of signatures. 510 so far on one when we need thousands.

My purpose in the very beginning was to work behind the scene to raise funds and to find top tier researchers who were willing to search for a cure for this illness. Unfortunately, with the possibility of the IOM contract redefining this illness with a CMI psychiatric label , my efforts have come to an end until a determination is made. So it has nothing to do with members on here but everything to do with the politics. Timing is everything and unfortuantely with the government in lock down, it makes everthing more difficult.

This is why I was asking those patients who can or if it is too much for them, perhaps their families, friends, and loved ones to reach out to other similar patient communities from other disease groups enlisting their support to sign our petitions or email the form letters that are on this site and other blog sites as well. Find one member in another patient community to spread the word within their own community creates Critical Mass with minimum effort...a simple spark can ignite a wildfire.

If you get stressed out, stop what you're doing. Your health is the number one priority. Engage in activities that are positive and bring some sort of happiness. This is a great community for support!

Many are involved on this site and others such as those listed on this thread and others. We have some great people working on this Attorneys: Jennie Spotila, Patricia Carter, Justin Reilly Esq. Patrick Calvin and Jeannett from http://thoughtsaboutme.com/ and Bob, Alex3619, Lisa PhD, Nielk,Caledonia, readyforlife and all the other wonderful members who have posted on these threads, in other forums and blogs!

Very effective!
All Fall Down for M.E. Awareness Day Mass Collapse in Westminster!



http://www.meassociation.org.uk/201...g-the-mass-collapse-for-m-e-demo-12-may-2013/

http://www.citizenside.com/en/photo...r-m-e-demonstration-in-london.html#f=0/712631

 

Why are you leaving? Did someone upset you? I hope that you are not getting frustrated with us and are inability to get organized. I for one am so brain fogged that I have a hard time understanding what is written here and have to reread what is written over and over again. If you are giving up on us that would be sad!! It seems that is what a lot of people do they give up on us.

I live in Seattle and married a Mercer Island boy.

Hope you stay with us.

 

What petition? You never mentioned a petition? What is the link to the petition?

Why are you leaving? Please stay around. We're just getting started.

 

The only petitions that I am aware of are the one thanking the 35 here, and an older one for a name changer here. If there is a petition out there to stop the IOM contract please let us know.

I understand some people's frustrations as to the need for immediate actions and from the masses but, we have to remember that we are dealing with a very sick patient population. Not only are we sick but we struggle with cognitive problems. Like readyforlife, I too struggle with these issues. Some days, I struggle with typing more than two sentences at a time. Most of our advocates are patients too and believe me they are working so hard behind the scenes! Some have been going to the capital and lobbying on our behalf. Others are working on CFSAC issues. Some are working on action alerts to patients with directions how best they can give voice in order to alleviate the problems. Actually, considering how sick we all are, it is amazing what we are accomplishing! I am grateful to each one of you for what you all do as best that you can.

In this time of great stress, we should really be here for each other and support each other.

edit - I just saw that Bob had started a thread on these two petitions and the link to vote for Aviva here.

 

Hello All. Because of eye sensitivities, my sister (Susan), a 25 year sufferer, cannot participate in online communities - so I help keep her informed, via FAX, as I am able. She wanted me to pass along, to the community, her conversation with Ian Lipkin and some of her ideas for advocacy. Thanks.
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Following Ian Lipkins presentation from CDC on September 10th, I wrote him a letter of frustration. I included the advocacy paper on the CCC with the 35 signatories and the background paper. On Oct 2nd, he received my letter, picked up the phone and called me. The following is a summary of the high points of the conversation and are Lipkins views:

1) Science is under attack by the sequestration and government shutdown.

2) He is committed to ME/CFS but recently received such a low score on a grant he wrote for research with the blood left over from the XMRV study, he knows he will not get funded.

3) The only way ME/CFS will go forward is to campaign and lobby congress like the AIDS-Act Up group did in the 80's.

Now my comments and some ideas to stimulate creative juices:

We do need to be militant, no more "inside voices". A demonstration in front of HHS buidling at the next CFSAC meeting as well as a demonstration at the Capital steps. To make it memorable:

1) Carry signs, "Take the "F Word" out of ME/CFS!". Patients state name at bottom.

2) Instead of tossing blood (as ACT-Up did) throw chicken manure to represent what we have gotten from congress and the federal health agencies.

3) Have somone dressed as a chicken handing our Press Releases. This is what Bill Clinton's campaign did when H.W. Bush refused to debate at a town hall meeting. That chicken was at all rallies on Bush.

We need to hire a part time lobbyist who is creative and organized for an ongoing campaign (NOT Kim McCleary). Perhaps the ME/CFS research sites at Simarron, Mt. Sinai, Nova, Stanford could provide seed money until we have a funding mechanism.

 

Thank you JohnnyD for posting your sister's letter.

It's important information here from Ian Lipkin that he got a low score on a grant proposal. So there is no funding for the search of pathogens in ME/CFS but there is funding for how to best cope with the disease?

 

The fact that Lipkin was able to get his study off the ground using the current CCC just goes to show how much of a waste of time and money the IOM contract is. Give the 1M set aside for the IOM to him to finish the study. FFS.

 

JohnnyD, we don't need to throw chicken manure. It might be more effective, and less likely to cause issues, if we have little gift baskets (recycled cardboard etc., though plastic might be more robust), with a miserly amount of chicken manure, with a note "Gift from the HHS to every ME/CFS patient". Put them on display. Less carrying, no direct conflict, more visible and pointed, less expensive, no legal hassles, and you can even hand them out to officials who come to question you at the protest.

PS Oh, when you hand the gift basket to officials, you can say something like "You can have your gift back."

 

The following is my draft attempt at a petition that, I hope, could be sent around to patients, advocates, and organizations for many different diseases to create a broad and powerful voice.

My goal was to make it emphasize the common tactics of abuse suffered by many of these communities. I think this might be something everyone will be able to understand and to unite and rally around (even if particular abuses don't apply to particular communities).

The concrete focus in the end is toward the IOM contracts for GWI and ME/CFS and how they need to be dismantled. Even though the most actionable demand is to dismantle the ME/CFS contract, I tried to make the petition as general as possible since any appeal to such a broad group will probably be less effective if we only make demands for ourselves.

My hope is that this or something like it could be made into an actual petition and posted around on various forums, in combination with relevant disease-specific introductions/explanations of the situation and petition.

Let me know what you think and if any changes should be made.

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To whom it may concern:

We are the sufferers, supporters, friends, and family of the many millions throughout America and many more throughout the world whose lives have been devastated by various “medically unexplained” diseases. These diseases include MS, Parkinson’s, Alzheimer’s, Autism, GWI, Lyme, ME/CFS, Fibromyalgia, Lupus, Crohn’s, psychiatric diseases such as Schizophrenia and Bipolar Disorder, and many others.

We are not united by particular commonalities in the pathologies and etiologies of our diseases (though certainly such commonalities are known to exist and others will undoubtedly be discovered).

We are instead united by the much stronger bond of commonly suffered abuse, negligence, malfeasance, and perhaps even fraud, at the hands of the very government agencies responsible for helping us. This includes the CDC, NIH, IOM, VA, and many other agencies under the HHS umbrella. It includes the office of the President himself, under whose auspices many of these events have unfolded and continue to unfold with implicit authorization.

We have witnessed common patterns of tactics employed by these agencies against sufferers of these diseases in order to marginalize and discredit them. These tactics include:

• The creation and promotion of overly broad, symptom-based disease definitions, in spite of objections from knowledgeable patients and expert clinicians and researchers. These definitions necessarily muddy research results by obscuring and watering down cohorts.

• The fixing of politically desired research outcomes by selectively funding researchers with ideologically-aligned perspectives, generally those promoting psychosomatic and psychosocial theories and the concomitant behavior-driven interventions and coping mechanisms.

• The persistent refusal to acknowledge and build upon large bodies of peer-reviewed, replicated research that show stark biological abnormalities underpinning these diseases. These bodies of research exist largely due to private and patient funding thanks to the biases in federal funding.

• The use of disingenuous and deceptive research methods and methodological alterations by health agencies to give the outward appearance of “good faith” biological investigation while actually ensuring outcomes in alignment with desired policy. One recent example is the CDC’s specious reasoning for conducting research on ME/CFS patients using only 1 day CPET testing instead of 2 day repeat CPET when the existing literature makes it abundantly clear that 2 day testing is necessary to show the abnormalities specific to the disease.

• The misappropriation of Congressionally mandated funds.

• The circumventing and ignoring of community-supported recommendations by Congressionally sanctioned advisory committees.

• The stonewalling of calls for transparency and the obfuscation of legitimate FOIA requests.

• The implicit fostering of disease illegitimacy in the public perception by the adoption and hyping of selective research and biased “expert consensus” that undermines the biological severity of the diseases and promotes an implicit blaming of the sufferers for their plight.

• The funding and bolstering of false patient advocacy organizations that misrepresent the views of their purported communities (patients, clinicians, and researchers) in order to create an illusory appearance of broad community support for government actions and positions that are actually opposed by these communities.

We have, in recent years, witnessed the unprecedented use of the IOM to create a new disease definition for GWI, rebranding it as Chronic Multi-symptom Illness (CMI) and recommending only behavioral and psychiatric interventions. This committee was formed in defiance of recommendations made by the Congressionally sanctioned GWI Advisory Committee and in spite of widespread opposition amongst the GWI community. The IOM committee was comprised of mostly non-experts, and the few GWI experts included were firmly entrenched in the psychosomatic camp. The committee was only permitted to consult with a subset of the published literature, a subset strongly biased toward psychosomatics, in order to derive their findings. It was a virtuoso performance of bureaucratic steamrolling.

We now observe that ME/CFS is next on the proverbial chopping block, having received an eerily similar IOM contract to create a new disease definition. Once again, this was done in defiance of the Congressionally sanctioned CFS Advisory Committee recommendations. The contract faces widespread patient opposition. In another unprecedented step, 35 of the most distinguished ME/CFS clinicians have penned an open letter to Secretary Sebelius, urging the cancellation of the IOM contract and the immediate adoption of an existing disease criteria (Canadian Consensus Criteria (CCC)) that is widely supported by patients, clinicians, and researchers alike.

We have had enough! We refuse to permit the HHS to proceed with its plan to bury our diseases one by one in permanent wastebaskets designed to ensure a halt to the already negligible scientific progress.

We demand that the HHS immediately take the following actions:

• Rescind the reports and recommendations of the IOM committee on GWI and undo the reclassification of GWI as CMI.

• Cancel the IOM contract for ME/CFS and take up without reservation the recommendation of the ME/CFS clinicians to officially adopt the CCC as a starting point.

• Formally renounce any future use of IOM contracts to redefine and/or reclassify other diseases.

• Formally acknowledge that the federal government and its health agencies have failed sufferers of these diseases by deliberately promoting psychosomatic and “medically unexplained” characterizations and by steadfastly ignoring and downplaying existing and growing evidence of biological pathologies.

We suggest you take these demands very seriously. We will no longer accept empty platitudes and meaningless bureaucratic shuffling. We will no longer stand by and watch each other fall one at a time. We are united for justice and scientific progress for all of us. Our numbers are larger than you can imagine and continuously growing, a fact that is all but ensured by the policies enacted by the US health agencies to stifle progress. And though we are quite ill (many unable to leave their houses or beds), we possess an unbreakable resolution that is forged not only in the bitter fires of devastating illness, but also in the unrelenting inferno of systemic abuse at your hands.

 

Hi asleep.

I really don't know enough about a lot of these issues to comment properly, but I had a quick read through the petition, and suggested some changes that I thought might soften the tone (without changing your meaning at all). A lot of it, I had no idea if what was being said was right or not, but I queried a few little things. Also, I wonder if it would be worth adding a little section on the biopsychosocial approach, and the harm done in the UK, eg:

"We have seen how the adoption of a biopsychosocial model of disability in the UK has led to the sick and disabled being mistreated by the government, and private firms like ATOS. We cannot afford to have the US follow this path, yet this seems to be the direction that the government and IOM intends to take us; against the wishes of patients, and without an open debate or democratic mandate."

I wondered if the whole thing could be a bit long? Or would benefit from a summary/intro paragraph?

I'm really not well informed enough to comment upon a lot of this stuff though. Best of luck with it - ta.