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What Should Phoenix Rising Tell the IOM Committee?

Nielk

Senior Member
Messages
6,970
At this point, and if I myself were making this pitch, I would consider stating:

(1) This secret contract is not wanted.

(2) The patient community has lost faith in the US government to stop its campaign of abuse.

(3) I would then state that my remaining six minutess will be used as a "moment of silence" to honor all those - civilians and veterans - who have died "naturally" or by their own hand, due to past and present state-and-corporate coerced medical negligence.

I really like this, Ren.

In addition, I was thinking that since we have the ability to show a presentation is to show real data from real seriously ill patients. For example,

Joe smith fell ill 15 years ago at age 48. Used to be a brain surgeon - now can't tie his own shoelaces.
Bill Johnson was struck on January 8th 1995. Used to play pro-football - now needs the use a wheelchair.
Lilly Doe was 32 when got sick with ME in 2007. Used to be bank manager - now disabled from work and homeless.

and so on...
 

Ember

Senior Member
Messages
2,115
My vote is to definitely state, for the record, that most of the community is against the IOM contract and are in support of our experts' open letter urging HHS to adopt the CCC now. Any criteria that they produce which is 'broader' than CCC will not be accepted by patients, advocates and the experts in the field....

Therefore, I would seek the following from this panel:

1- Go back to the core of this disease. This is a complex, serious, debilitating, multi system disease which leaves it's patients disabled. All can't continue to function in their life as before. About half can't work at all and a quarter are left bed bound for the rest of their lives.

2- Give this core disease it's due name of 'Myalgic Encephalomyelitis'.

3-PEM/PENE has to be a hallmark of this core disease.

4-Neurological and immune dysfunction need to be present.
Considering both the experts' letter and the mandate outlined in the Statement of Work, I would rather ask the IOM panel to endorse either the CCC, or if more recent research is needed, the ICC:
We are writing as biomedical researchers and clinicians with expertise in the disease of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to inform you that we have reached a consensus on adopting the 2003 Canadian Consensus Criteria (CCC) as the case definition for
this disease.... The expert biomedical community will continue to refine and update the case definition as scientific knowledge advances; for example, this may include consideration of the 2011 ME International Consensus Criteria (Carruthers et al, Journal of Internal Medicine, 2011).
The Committee should review the efforts that have already been done, including the 2003 ME/CFS Canadian Consensus Definition, the 2007 NICE Clinical Guidelines for CFS/ME, the 2010 Revised Canadian ME/CFS Definition, the 2011 ME International Consensus Criteria, and data from the ongoing CDC Multi-site Clinical Study of CFS. Also the committee should communicate and coordinate with the Office of Disease Prevention at NIH regarding their ongoing Evidence-based Methodology Workshop for ME/CFS in an effort to minimize overlap and maximize synergy. The coordination with NIH should assure that relevant information is shared and that key messages are coordinated. During one or more public meetings, the Committee shall consider the testimony of ME/CFS patients, caregivers, and advocacy groups in addition to relevant subject-matter experts such as clinicians, researchers, service providers, and public health officials.
 

Seven7

Seven
Messages
3,444
Location
USA
I sent my written testimony. I said ME in a nut shell is inability to produce energy on demand and you getting worse when you push through it. I gave my whole story too.

I focused on my symptoms, successful treatments and my abnormal tests.

I received an email back that the comment will be submitted in public record. We need to overwhelm them prove of decease
 
Messages
41
At this point, and if I myself were making this pitch, I would consider stating:

(1) This secret contract is not wanted.

(2) The patient community has lost faith in the US government to stop its campaign of abuse.

(3) I would then state that my remaining six minutess will be used as a "moment of silence" to honor all those - civilians and veterans - who have died "naturally" or by their own hand, due to past and present state-and-corporate coerced medical negligence.

I also love Ren's basic idea (more below, #2 & #3).

But my preference would be:

(I had a long answer, but I have those arguments posted elsewhere. I'll reword them here if necessary.)

1) My first comment would be for PR to completely boycott the IOM meeting: They do not exist in our eyes. Turn our attention / batteries toward our own experts, acknowledge, validate and fully support their decision to adopt the CCC, unwaveringly. If you have to respond in some way, tell IOM (HHS) that "We the Patients, for whom you work, did not authorize this ambush agreement between HHS and IOM. Our long-time experts are our trusted, worthy advisers; the government once again - like so many times before - has proven itself unworthy of our trust. You are fired."

If you insist on wasting precious energy by going in person, say this loud and clear, then turn and walk out. Make no apologies. If anyone deserves an apology, it's the patients, as Dr. Montoya rightly says.

(I saw Adin mentioned "esteem". The only esteem I have is for our ME and cfs experts who have stood with us through decades of their own ridicule. It is the very crowd of esteem-seeking, main-stream medicine people, like those at IOM, who have dismissed us and/or fed us to the shrinks for 30 years.)

2) Now, Back to Ren's comment: If you insist on acknowledging this unauthorized group, go with Ren's point #s 1 & 2. Maybe slight rewording, like, "This secret contract is not wanted and was not authorized by the constituents it is alleged to represent".

3) Then, with whatever time you have left (3, 5, 7 min - who knows?), as Ren suggests: Therefore, we will use our time "...to honor all those - civilians and veterans - who have died "naturally" or by their own hand, due to past and present state-and-corporate coerced medical negligence..." and begin reading the long list names on the Memorial List(s). Start with the most fresh in our minds and notable:

Casey Fero
Tom Hennessy
Sophia Mirza
Lynn Gilderdale
Nancy Kaiser (Dr. Dan Peterson's "Patient 00") ...

... and add the years our fellow patients died, starting way back in the late 80s.
http://www.ncf-net.org/memorial.htm

I guarantee you will raise the roof on that 'meeting' by doing either of these things. And bedridden patients in dark rooms across the world will be flipping their Bics to honor PR as heros!
 

Ren

.
Messages
385
I could only do what I wrote, if speaking on my own behalf. I couldn't do that on behalf of the group because it wouldn't reflect/express the important points everyone's made. I do like the idea though of trying to incorporate, if only briefly, a statement of respect for those who've passed on or are too ill to even share their voices. It seems the policy makers are fighting for policy, and not for people. We're fighting for people.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Part Two of the IOM question.


What should the IOM ignore? Any claim that ME is psychogenic.


First, the general reason. How many diseases has this been claimed about? How many have been proved right? How many have been proved wrong? Think about that. The batting average is zero to very many.

Second, all psychogenic disease is based on a logical fallacy, called the Psychogenic Fallacy, and written about by Sykes.[3] If a cause is not known, then its not known. This is so obvious yet it is so often ignored. It may or may not be a mental issue, its at best a guess, and there are clear biomedical issues. So very many claims have been shown to be something biomedical and not psychogenic, from epilepsy and diabetes, to MS and gastric ulcers. Research proceeding from a presumption of psychogenic disease is flawed.

Third, much of their own research is an own goal. The PACE trial published in The Lancet in March 2011 showed about 15% improved beyond the control rate of improvement, and even that was small and subjective improvement. Its easily accounted for by bias in the study design and implementation. They dropped actometers from the study, despite planning to use them, at a time when other studies using actometers showed either no improvement or a decline in function. Here is one thing that is inescapable: they show no substantive objective improvement in functioning of patients from CBT/GET, nor do any other studies. They should not have dropped the actometers. There are numerous other methodological and statistical flaws in the PACE trial, but there are too many to mention here.

All psychogenic illnesses are hypothetical. Treating them as more than that is probably unethical and immoral. Its what Karl Popper called nonscience.There is a huge difference in how the world treats mental diagnoses, in society, organizations and in medical practice. Most of psychiatry is not scientifically based, but that does not mean it cannot be rigorous. The problem is that once its thought of as scientific its presumed that standard scientific practices are adhered to. To a large extent they aren't. So a study that meets the technical basis for a high standard of evidence, such as an RCT, may be actually a very poor study due to its methodological failures. Methodology matters.

As patients we have a right to dismiss such baseless and nonscientific medical claims. We have a right to reject treatment based on such claims, but agencies often force them on us, either as a requirement for compliance or through sectioning. We also have a right to object to such large research budgets for psychogenic medicine when many findings in the biomedical science cannot be replicated due to lack of funding, and when such funding leads to a distortion in the evidence base. We have a right to there being no undue influence toward a new definition based on psychogenic studies.

If we have a psychosomatic illness because a physical illness cannot be objectively shown, how is a psychosomatic illness any more valid since it cannot be objectively shown? Yet there IS biomedical evidence for ME, but the same cannot be said for any psychogenic disorder.


[3] Medically Unexplained Symptoms and the Siren “Psychogenic Inference”
Richard Sykes

From: Philosophy, Psychiatry, & Psychology
Volume 17, Number 4, December 2010

[4]http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I currently think rejection of the IOM process should occur but take no more than ten or twenty seconds, and be at the end of the presentation, as a political statement.

Short terse focused statements are needed for the most part, but written testimony can also be submitted, and it does not have to be so brief. Hence further justification can occur in a written document, beyond what is spoken.

If we wish to rely on AV presentation, including power point slides, then we need to be really sure they are set up to accept such presentations. They might not be.

The "aspect" part of the question gives us a basis for political comment: “What is the most important aspect or information that this committee should consider throughout the course of the study?” So political comment is not outside the scope of the question.

What this really boils down to is the HHS and IOM have lost the respect of the ME and CFS communities. They are being closely watched, and any report will be scrutinized intensely.

PS Does this mean PR might give a written as well as a spoken commentary, and that most of the issues we have raised can be considered in the written testimony? I think so. Does anybody know if this will be allowed? This might also permit a minutes silence for all those who have passed on, as the bulk of the detail would be written.
 

barbc56

Senior Member
Messages
3,657
What this really boils down to is the HHS and IOM have lost the respect of the ME and CFS communities. They are being closely watched, and any report will be scrutinized intensely.

I don't think that is true of the whole me/cfs community.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I don't think that is true of the whole me/cfs community.

Agreed, but most of the community do not actually appear to even be aware of the issue. As always this is a fractured community. I predict most of the others who currently respect CDC, HHS and IOM are going to be very unhappy with them in about two years time. I would really like to be wrong about this though.

If we want an idea on numbers, we really need some polls.
 

Marty

Senior Member
Messages
118
Tell them that everyone who did their homework to prepare for this meeting by going to the CDC website received incorrect information and should mark it as such in their notes. The CFSAC and patients have requested that it be taken down as not only incorrect but harmful, but Dr. Unger has refused, despite recommendations, requests, and petitions to do so.
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
As I understand it, this is a meeting with the panel, not with the IOM as a body. Nancy Klimas worked on both the CCC and the ICC, I believe; I would be a little modest in advising her? Chris
 

golden

Senior Member
Messages
1,831
As I understand it, this is a meeting with the panel, not with the IOM as a body. Nancy Klimas worked on both the CCC and the ICC, I believe; I would be a little modest in advising her? Chris

I should like clarification on this.
Unfortunately, I am not understanding the full dynamics and so have been unable to comment.
 

Nielk

Senior Member
Messages
6,970
I should like clarification on this.
Unfortunately, I am not understanding the full dynamics and so have been unable to comment.

This open meeting will be in attendance with the panel of fifteen selected by the IOM for the study to define ME/CFS. - http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49592

This panel is made up of about half known experts in the field of ME/CFS and half 'unknowns'.

I think that what Chris was referring to is that an expert like Nancy Klimas does not need advice from patients of how to classify and/or define the disease.

While this may be true, the half of the panel who have no knowledge/experience in the disease, need as much guidance as possible. (in case this IOM study persists to continue)
 

golden

Senior Member
Messages
1,831
Thanks Nielk.

Is the presentation then to a group of individuals?

Exactly how many are experts and how many non-experts? If non-experts, what are they a non-expert in?

When is the deadline for thread contributions as i feel really ill. ?

Golden
 

Sparrow

Senior Member
Messages
691
Location
Canada
I could only do what I wrote, if speaking on my own behalf. I couldn't do that on behalf of the group because it wouldn't reflect/express the important points everyone's made.

I agree. I think Ren has written a powerful statement of his objections, but I don't think that the PR presentation is the right place for it. By its nature, Phoenix Rising is made up of a diverse group of individuals with their own differing views on this issue. There are a lot of places where people seem to make assumptions about what all patients here feel about the contract, or how we want to proceed, and we're just not actually that uniform.

As others have suggested, it seems to me like it might be most fair for the PR presentation to include sincere answers to the question posed by the committee, combined with some sort of brief formal statement of protest at the end. That way you answer the question asked, but also log objections to the contract for the record. It seems like a reasonable compromise.

People with more extreme views on either side (wanting to protest exclusively, or wanting to actively support the government finally taking some action) can send their own written statements for consideration, to the e-mail address given earlier in this thread. But it seems wrong for the PR presentation itself to exclude either group too badly.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Just thinking out loud, but do we want to do something unique vs the usual PowerPoint presentation? Since we are such a unique organization, maybe we should try something a little different?

My first thought was a collage or a montage of patients and a single sentence from each? (Like 10 secs?)-We could get 20ish people and still have a minute to open, make one extra point, and close. This way we could get them to see *us* ... I think that we don't want to repeat the same points that everyone else is going to present. I think that letting them see *us*, over and over again might make the emotional impact that might just remind them that this if affecting people in a real significant way and not just hammering out another report/paperwork.

Any other ideas???

Edit : to answer marks original question: The need to know and understand that we are a group of people with a condition that either isn't taken seriously or is mis-treated because medical professionals have "beliefs" instead of guidance, facts, and education — keeping an entire population in a perpetual 'end-stage cancer' state with little care, few treatments, and no hope.

I really like this idea.. slides with photos of people with a sentence on their worst symptom or issue with this illness. It could be something which could quite make an impact

eg for myself.. I could make any of the following statements
"I need to now shop in a wheelchair and have someone push me as I cant push myself"
"bedbound by this illness and unable to walk, for 9mths my 10 year old had to take care of me"
" my bowel prolapsed cause of the IBS-C due to ME"
" I put myself into jail knowing I'd not then be missing my meals due to being too sick to cook"

Big impact statements of the real effects of this illness. We soo need to get throu to the committee members who dont know nothing much about our illness of just how severe it is. Probably thou not enough time to arrange something like that. We so need to get that committe aware that there is far more to this illness then fatigue, headaches and lack of sleep.

I think the photo idea with someone reading each persons sentence statement would really grab the attention of the committee members (it certainly wouldnt a boring talk if they've already heard many others).

Actually there could be time to do some of this if it was called for people to start sending it photos and their each persons hard hitting statement of their illness (even if there was just 5-10 of these from this community, it would make the PR talk that bit more interesting and turn it into being "real people"). It would also give people here a chance themselves to have like their voice heard even if Mark or another was reading out the statement.

At the end of the photo/statement part.. it could be finished off by a plea to not let us all down by not taking this illness as severe as it is.

Since the question “What is the most important aspect or information that this committee should consider throughout the course of the study?” , one must stay relevant in reply.

The most important aspect that the committee needs to hold is the seriousness and symptom complexity of ME. (hence that photo/statement idea would cover addressing the question put to PR). I dont want them to forget that while they are looking throu the research etc that there are lots of us extremely sick with complex symptoms.

You could also point out all the photos are ME patients not CFS patients (if you just called for photos from ME people.. most of us here are that anyway).
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I can help put things together but I *definitely* need help from others to brainstorm & get together source material. I really want as much of what we (I?) present to be from the members as possible.

I apologize as I'm pretty brain dead due to our newborn (3 wks old today!) since my wife and I are both PWCs.

adin.. you are doing an amazing job trying to get this together..
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
In my wildest dreams PR lists our objections and then a large crowd of patients in jammies appears w/ blanket and pillows and lays down inside venue and outside venue and has a sit- in type protest. Let them carry us out to jail in our jammies.

P

oh lol.. I so like that dream.

But I was just thinking that protesting at the time this all is being held would be a good time to protest.

It would be great to have people with signs saying "We want the CCC" "Stop wasting tax payers money on the ME/CFS IOM contract" etc
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Me too. In this case I think emphasizing the impact on us would not be an effective use of the limited time Phoenix Rising will have for their contribution.

The members of the IOM Committee are scientists who will be focusing on diagnostic clinical criteria. They will be looking at the science of the illness, not at us.

It will be so cool if they can get that right, finally.

~
~
~

Yeah but the science they are reading itself matching what they've heard coming from patients, it shows there is something really wrong eg badly done science going on.

The science should tally with the illness patients describe.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
How do we clarify the difference between shoddy 'functional' CFS research and good quality biomedical (ME-related) CFS research. Or should we even attempt to? Can we come up with a formula that could help the committee distinguish 'functional' chronic fatigue (CFS) research (that is not related to ME) from ME-related CFS research? Or would we be shooting ourselves in the foot by attempting to distinguish 'good' CFS research from 'bad' CFS research? If they don't consider good biomedical (ME-related) CFS research then it will leave them very little pure ME research to consider.

(These are all questions - I have no answers at this stage.)

I dont think there is enough time in the time being given to get into that at all as its complex. Hopefully the ME aware ones on that panel will be able to help the others with that.