What Should Phoenix Rising Tell the IOM Committee?

[taniaaust1]

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

Maybe any going to this could write "CCC please" on their t-shirts in bold letters.
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I just had a funny visual.. of someone handing out badges for people to pin on themselves in support of the CCC and of the whole audience wearing these.

 

[taniaaust1]

At the end of the talk I think the whole HHS/IOM contract should be objected to.

I keep thinking that its likely that anyone who does a presentation could be told right before it that they arent allowed to mention how it is felt about the IOM contract (or even made to sign something to say they wont). If that is the case.. it would be best to mention it right at end (I still think it should be mentioned even if it is a one sentence line saying most here oppose).
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Here's something which I think would be good to bring to the IOM attention... pointing out that many of us really dislike how this illness is just defined by a small group of "symptoms" and how doctors are then left unaware that we have a heap of others http://wwcoco.com/cfids/bernesx.html . (could a good symptom list like this or actually this one with percentages of us with them (which helps to show the extent of this illness) be handed out to the IOM panel members? The panel members would be doubtful to see this otherwise.. (Note this list got made based on info from ME experts)

With ME we need equal attention on all our symptoms depending on what is affecting us the most. Too many times Ive had a symptom ignored cause it isnt in the ME/CFS definition.

 

[taniaaust1]

Perhaps.

If we want the IOM to interpret Fukuda+PEM as equating to 'ME', then perhaps we need to explain this clearly to them in our submissions? But then (if Fukuda+PEM defines 'ME') they might question the need for CCC/ICC?

I haven't got any answers at this stage, which is why i'm asking questions.

I too have the same worries.. we are already possibly slighly watering down the international ME definition by going for the CCC.. how much further would we be prepared to water it down?

Maybe we should be making it easy for this panel by drawing a simple line and saying that anything less then CCC study should be considered CFS and not ME (as after all we want things to be refined from the CCC not made more general). That we it will disclude all those crap psych studies from being counted as ME studies...so I do think we maybe should draw a clear line.

If we start wanting this or that CFS study included cause it had this or that abnormality.. it may open the door to a whole heap of bad CFS studies which were done too.

So yeah..some ME abnormalities have been found in CFS studies but we do have studies out there in which the CCC was used (I know quite a few Aussie studies have used the CCC).

So I suggest to draw the line clearly at CCC (and that pushes too that we will accept no less then something like that). I personally think Im old study if it was done right shouldnt be discluded and discluding old studies would be a very wrong thing for this panel to do (as research is research). I'd like that panel to be called to not reject a study cause its old esp since so little research has been done on us in biological fields.

 

[Sparrow]

With ME we need equal attention on all our symptoms depending on what is affecting us the most. Too many times Ive had a symptom ignored cause it isnt in the ME/CFS definition.

I've had that problem too, and it probably is an important one to highlight for them - please pay attention to the wide variety of symptoms we have, so that doctors will be aware of them. Before my diagnosis was solid I went to a very well-respected diagnostician who told me that there was no illness that could possibly be causing all of the symptoms I described to him. ...At which point, of course, he assumed I must be at least partly mentally ill.

 

[taniaaust1]

Doesn't Fukuda+PEM seem closer to a description of ME than to CFS?

I think care needs to be taken with those studies of people with PEM as PEM can be defined in different ways by different people. Whereas we define it often as a delayed reaction to exertion.. some of those poorer researchers may of counted tiredness immediately after exertion (not looking for a delay exertional response).

anyway.. the above is one of the reasons why I think we should say that no study less then CCC being used should be counted as ME.

 

[taniaaust1]

Since there's been some good feedback here, is there anyone who's up to working on putting this presentation together with me?

And I hear most would like a more technical presentation along with stating our objection to the contracting methodology and the composition of the panel. (Please don't get too hung up on my wording yet as long as the concept is correct).

Btw, one thing that Klimas has been working on was immunological biomarkers for ME, so she may have some diagnostic criterion that have not been published/peer-reviewed yet and that may be released before the conclusion of this panel. Also note that Dr. Klimas testified to congress this week about the US VA's inability/refusal to implement her GWI diagnostics & treatments outside her VA specialty clinic.

This definitely is the big leagues and we have to be a little careful about how we present our information to this panel. While we don't recognize the validity of this panel to define our illness, every single member of this panel is highly esteemed in *some* field. In my humble experience, in the medical research field, the larger the esteem, the larger the 'self-esteem'.

Good thinking.. there will be more studies out which do use CCC minimum which will be coming out during the whole IOM process. (We may get a follow up brain study abnormalities that Im in which uses the CCC published in that time.. I cant remember if the original one used the CCC too but it may of done.. it showed abnormal shrinkage of our mid brains). The researchers over here (Adelaide) hope if the follow up study shows the same abnormality that it may be able to be used as a biomarker.

Many of the Australian studies I think may of used CCC.

 

[taniaaust1]

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!

I like your idea but the issue would be that PR would never get another invite to anything in future.

but yeah maybe something done for a very short time in honour of all those who have died who fought to have ME recognised would be good. A statement could be made with this "For us and those who have died fighting to get their disease recognised, Please get the ME definition right and separate ME from CFS". eg picture of sophia, picture of lynn etc with age of death.. Alison Hunter needs to be included too if that is done (she died of ME not suicide).
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I ask whoever is putting together the PR talk to give at least 1 min of the talk to something which will cause some kind of emotional impact. be it some kind of photo idea or whatever. PR could call for 10 seconds of silence in memory of those others (which will be something those panel members wont forget was done).

 

[taniaaust1]

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

Yes the presentation is to the IOM panel, a panel which was formed which consists of non experts and experts in ME. The number of non experts slightly outweigh the number of experts (non experts=those who havent had anything to do with ME/CFS before.. sighs one of them has hysteria for an interest and has done writings on that).

The non experts have been put onto the definition panel for supposely to make the panel have more balance (yeah stupid idea esp when other diseases have been defined by their experts alone).

I think the deadline (thou I may be wrong) is very soon.. this month 20 something??
This may be the only chance the public gets to say anything to the panel members who will be doing the new ME/CFS definition and we can expect the rest to go on behind closed doors.

 

[justinreilly]

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.

OMG, Adin, you have a 3 week old and you and your wife are pwME and you are volunteering to help out?! I am totally bowled over. I haven't read the whole thread, but I would like to ask you to please not get involved to a point where you crash, your baby needs you.

btw, CONGRATULATIONS!! woo-hoo!

 

[Bob]

OMG, Adin, you have a 3 week old and you and your wife are pwME and you are volunteering to help out?! I am totally bowled over. I haven't read the whole thread, but I would like to ask you to please not get involved to a point where you crash, your baby needs you.

btw, CONGRATULATIONS!! woo-hoo!

@adin, I agree with Justin.
I'm very grateful that you're doing this for us all, but...
Please prioritize baby, and please don't exhaust yourself on this project.
Baby comes first!

And, as Justin said...

CONGRATULATIONS

 

[Bob]

I'm not sure if I read this in detail earlier. For others who are a bit slow, like me, I'm quoting the details here:

Public Comments:

Written comments may be submitted to the committee at any time during our study process.

There is no deadline or character limit to submit comments. As with any information sent to inform the committee, all written comments will be placed in a Public Access File in compliance with Section 15 of the Federal Advisory Committee Act.

If you would like to submit written comments for the first meeting, please use the email (mecfsopensession@nas.edu).

Please focus your comments on the following question: "What is the most important aspect or information that this committee should consider throughout the course of the study?"

Written comments received by January 22, 2014 will be distributed to the committee before the meeting on January 27.

After January 27, written comments should be sent to the project email address (mecfs@nas.edu).

All comments will be considered by the committee, but they may be distributed after the meeting is adjourned.

http://www.iom.edu/Activities/Disea...elitisChronicFatigueSyndrome/2014-JAN-27.aspx

 

[Ritto]

I'm neither an academic nor a scientist but here's my three ha'pence worth.

PR has been given slot to make a pitch on what we consider the committee should consider...

The committee know little of our illness and they will be looking at published papers.

I think we need to tell them how sick we are and how difficult it is to taken seriously...

AND, I think we need to destroy the PACE Trial, which is surely going to jump out at them.
Somehow we need to give them reason to really examine the paper so that they can dismiss it and get to the real stuff.

I don't remember what rules there are about our pitch but there are the wonderful little videos that someone (sorry, don't remember who) made that explained the maths of PACE. Are there any Advertising pwME here who have ideas of how get this point over so that it becomes more memorable; I think it is the most important point of all.

 

[Firestormm]

@Ritto I believe the IOM review will only look at definition and not at treatment so it is believed that PACE will not be as much as a factor as it might have been.

 

[Ritto]

Thanks @Firestorm. I hate it when I do that!

 

[Firestormm]

Thanks @Firestorm. I hate it when I do that!

I wouldn't worry. I think it's right to bring it up. The fact that we only really have management programmes made available by way of general treatments tends in my mind to indicate the lack of seriousness with which the illness is taken; and it indicates that at best we - as patients - are left in this awful 'holding pattern'. Waiting on someone, someday, to really get to grips with what is wrong, and do something about it. That said, I don't think we - meaning all of us as a patient group - are in a position - with the science and knowledge - to be offered much more than appropriate and better designed management plans. But mine is not a popular view.

 

[justinreilly]

@Mark, I have posted a draft of the letter I will send in to IoM on its own thread. I'd appreciate it if you could consider my comments along with everyone else's when you write Phoenix Rising's comments. Thanks!

http://forums.phoenixrising.me/inde...or-iom-panel-first-meeting.27597/#post-420428

 

[Ren]

Has it been decided as to who is going to deliver PR's message to IOM? Thanx.

 

[In Vitro Infidelium]

As far as I can tell PR is the only patient org with a legitimate claim to have an International member/contributor base, that has been invited to address the meeting on the 27th. It’s only on that basis that I’ve stepped back in here. Personally I’d like PR to give an honest account of the profound differences in perspective that are inevitable within a patient population measured in millions and spread across every national and cultural boundary known. Certainly if we are talking about views held beyond the borders of the US, then it is absurd to make any claim of a single ‘M.E Community’, or for any group to appropriate to itself the capacity to speak authoritatively on behalf of this mythical community. For those who are US residents, the long held antipathies toward/between competing groups are again well in evidence, and if there really is such a thing as a US M.E/Community, it seems markedly mean spirited.

I’ll make two brief comments on approaching a presentation.

a) If someone invites you to offer an opinion on what they are doing, don’t then insult them by telling them what they are doing is a waste of time, and then expect them to ‘hear’ you. If you don’t like the process – say that, full stop ! Don’t attend a public meeting to say how much the public meeting is stupid/corrupt/wasteful - put the objection in writing, it’ll have far more power.

b) The Government isn’t the enemy. Or is it ? – reading PR re: the IOM issue, I’ve wondered at times how come the HSS or IOM has avoided implication in the Kennedy assassinations, or complicity in the Waco deaths, or be blamed for the Banking crisis. If positive involvement in the IOM process is the intention, then there’s no room for fighting past battles or for ambiguity about whether ‘Government’ is a valid institution. Identify the big issue and convey that – anything else is just indulgent flummery.

And my personal take as a PWME on IOM:

1. The 35/50 (claimed to be) experts were misguided in their initial responses.

2. The 50 claimed experts are nothing of the sort if the area of expertise is M.E/CFS – there can be no expertise in an undefinable medical condition. The fifty include a number who under any circumstances are unworthy to be associated with patient interests.

3. The CCC is an interesting but largely useless systemisation of symptomology.

4. The ICC is useless at best, and probably deserves listing under the nosological heading ‘stupid’.

5. The IOM is the most significant administrative opportunity afforded M.E/CFS patients in 20 years, failure to engage with it fully, bespeaks monumental cowardice or pathological obstinacy.

IVI

 

[Firestormm]

Oh my day suddenly got brighter Nice to hear from you @In Vitro Infidelium Happy New Year

 

[Snow Leopard]

One word: Transparency. Two words: open participation.

Seriously, any recommendations need to be "road tested" with patients to see whether the patients think they make sense.

To do otherwise will lead to trouble.