Live webcast IoM meeting Jan. 27th 1:pm starting

[taniaaust1]

Lee is also inviting the IOM to rename it. She mentioned that the name "CFS" causes harm to patients.

I knew that would be suggested.. Im sure they would like it to given the same name as they've given the gulf war syndrome group... whatever that crap name was.

 

[taniaaust1]

Am I the only one who chuckled several times when we were repeatedly assured the IOM report will be very rigorously be reviewed? Oh, like the shoddy GWI report they released recently?

Umm reviewed by who I wonder? Reviewed by mostly Wessely schoolers? Reviewed like the many flawed ME/CFS studies out there who have some how passed reviews and got into journals?

Will these reviewers be secret ones? men with invisible faces?

Yeah Im sure hearing its going to be reviewed makes us feel a whole lot better about it

 

[taniaaust1]

Posted by Wildaisy: "At the IOM meeting today, January 27, 2014, Jay Spero read the following statement on behalf of Derek Enlander, M.D."

A group of us are forming the "Academy of M.E. & C.F.S. Physicians," composed of experienced clinicians and researchers familiar with the disease, M.E., and related conditions. The Academy will be an Independent resource for government, corporate and private groups to derive information relating to the latest research, diagnostic methods and treatment approaches.

Im so glad to hear that, that is so needed

 

[taniaaust1]

I was not particularily impressed by neither Dr Lee or Dr Meir, and after both presentations, I was ery confused and perplex as of what this committee was meant to do, and yo be quite honest, I thing some of the committee members were also confused.

i worry when the IOM is being given a mandate to pick a definition that will suit the general practitionners- do they actually and should they assume that there won't be a medical specialty for us?

No medical specialty will cause harm for us, and delay in research and clinical trials.

I agree. If the general medical practioners find the CCC too complex for them to use.. there is no way they are going find another "suitable" ME defintion easy to use either.

The definition being used should be put in the hands of a specialist field and taught within that field. GPs with not enough schooling in this complex illness shouldnt be the ones who are having to diagnose and deal with it. In this regard, IOM can only fail if their task is to come up with an easier defintion for GPs to use.

 

[taniaaust1]

I'm going to play a game of telephone. Except the message won't have to go around a whole circle to get ridiculously distorted. I just needs to go in my ear and out my typing fingers due to my brain fog making a mess of my thoughts.

So, here is my cartoonish memory of Jeannette's beyond fabulous speech yesterday. I will then compare it to the real thing when it comes out, or the transcription on mecfsforums.com if it is posted there.
_____________

Jeannette:
"Quo Warranto? (i.e. 'By what legitimate authority do you exist?'). You are an illegitimate and unlawful medical entity akin to a back-alley abortion clinic. I have personally filed a federal lawsuit to uncover your secret ploys. My husband is hungry for litigation, but I have asked him to wait to see if you will slink away and disband after this meeting.

You are not qualified. Half of you are ME rubes who just fell off the turnip truck. You can not produce any meaningful definition. That prospect is insanity (as Mindy said).

Fukuda destroyed Millions of lives, but you will not be permitted to commit a similar offense.

If you draft a definition, it will be immediately housed in a reliquary and shipped to the the Ripley's Believe It or Not Museum warehouse like at the end of Raiders of the Lost Ark.

I will then retrieve it from the warehouse and grind it into fairy dust with lawsuits and public outcry. Your fairy dust will be scattered to the four winds, to live in memory only.

Thank you for your kind attention."

LMAO. thanks, that's so funny.

 

[leela]

I'm sorry but people who went through at least 8 years of higher education find the CCC too complex to use, but patients and ME specialists wrote and understand it? Who do they think buys this baloney?

And yes, I agree, a specialty (or three) needs to be assigned to this disease. Is the material for understanding cerebral palsy a one-page handout?
Is there a 4-color pamphlet for non-hodgkins lymphoma or ALS? Give me a break.

 

[taniaaust1]

I was also left more confused than ever about the process of this crazy P2P thing--especially when she explained that the relationship between the experts who would testify and the panel of explicitly non-expert people ("opinion leaders" in various fields--just what we need, industrialists, financiers, lawyers)- her analogy was experts giving testimony before jurors at a trial. Has she forgotten that a jury that could not understand DNA evidence acquitted OJ Simpson a good many years ago? One needs to know something in order to understand difficult material--is our fate going to depend on how persuasive a researcher can be in front of an ignorant panel? Is this "democracy" at work--in a new guise? I was just appalled.

I feel the same way about this.

 

[taniaaust1]

I'm sorry but people who went through at least 8 years of higher education find the CCC too complex to use, but patients and ME specialists wrote and understand it? Who do they think buys this baloney?

And yes, I agree, a specialty (or three) needs to be assigned to this disease. Is the material for understanding cerebral palsy a one-page handout?
Is there a 4-color pamphlet for non-hodgkins lymphoma or ALS? Give me a break.

What's the bet that ordinary general practioners dont diagnose those diseases.... so why are they wanting them to define our serious complex illness. Expecting ordinary GPs to be dealing with our illness just shows how determined they are for it to not be getting taken seriously and how much they want keep it downplayed.

 

[alex3619]

I'm sorry but people who went through at least 8 years of higher education find the CCC too complex to use, but patients and ME specialists wrote and understand it? Who do they think buys this baloney?

And yes, I agree, a specialty (or three) needs to be assigned to this disease. Is the material for understanding cerebral palsy a one-page handout?
Is there a 4-color pamphlet for non-hodgkins lymphoma or ALS? Give me a break.

Yes, they trot out pathetic explanations, it seems to be a pattern with a number of people pushing alternate ideas to the mainstream research view. The definition is as complex as it needs to be. If the documentation is too complex, then perhaps easier to read documentation would help, or an expert system to walk the doctors through it that can be downloaded for free.

 

[leela]

Dude, if We the Brianfogged can understand it....

If they're not going to give us a cure, they should at least hand us all honorary PhDs.

 

[Ember]

According to Dr. Peterson, "You can simply tick through the questions:"

So the most widely accepted definition is the Canadian Consensus, established in 2003. This is used in most clinical trials now. It's used as entrance criteria into the upcoming Columbia studies with Ian Lipkin. It's used in a number of drug trials, etc. So I encourage if there are physicians who aren't using this definition, they should be. This has now been automated, so that there's a downloadable program, so you can simply tick through the questions and find out if the patient meets the CDC criteria or the Canadian Consensus Criteria or both. And that's very helpful for physicians because it was cumbersome to figure out whether or not they met the criteria. And that has an iPad application even, so it's really helpful.

 

[Firestormm]

Peterson talks about CDC and CCC from 11minutes into that video...

There are I think critiques that can and should be made of the CCC but as a supporter of it myself, I simply think it's probably the most reasonable one we have and as it is used widely now in research, it makes most sense to at least begin a review based on this one.

Without looking at it again right now, one of the issues I had was that it includes other diseases as possibly something that PwME might also require or show signs of for a diagnosis of ME e.g. (from memory) Ataxia. This and other things, are perhaps reasons why it is not as acceptable as it might be.

I do wish we had had the time to properly review the definitions ourselves and to have included a summation of this in our presentation: but again we are limited by what we can do, and I think we should reasonably expect others to achieve this end.

I think though - Dr Enlander - was correct and this could have been discussed and harmonised openly. But we are where we are now. And I hope that if those ME clinicians and researchers on the IOM have not been too discouraged by events the other day (and do not themselves resign and leave the panel bereft of their expertise), these issues will now be discussed and ironed-out.

However, I am left wondering why it is that given our state of knowledge and lack of biomarkers, we can't get by with one definition for research and clinical diagnosis. Maybe that will be the end result - but all it takes is for a discovery to be replicated in the meantime: and the game changes yet again.

Of course the same could have been said at any point in the last 50 years and it hasn't happened yet. For me at least, a new a more closely aligned definition to CCC is warranted now. People in the USA and across the world as a result - need to feel reassured that they have as firm a diagnosis as is possible to provide.

We do need to drop CF out of the equation and create a single entity of ME. Though I doubt very much if Encephalomyelitis will be the new name - and still prefer Encephalopathy. But, presenters were probably right in that environment to repeatedly use the traditional Encephalomyelitis.

 

[WillowJ]

Encephalopathy means too many things. It can refer to just about any kind of brain disease which is considered to be organic, but it can also refer to disease which is considered to be psychiatric. That is about as useful as "functional", which is to say, would likely do more harm than good in a case where the disease is contested.

 

[alex3619]

There is a huge problem with the name ME-yelitis though. I have discussed this a few times now, but to most doctors ME=CFS=nonexistent, or wastebasket, or psychogenic. This was largely due to the 1970 McEvedy and Beard paper on the Royal Free Hospital ME outbreak.

ME is much better than CFS, but its still tainted. ME-opathy is in between - not as specific (too vague) but better than CFS, though still tainted.

We need an entirely new name. However I think ME is best as an interim name until we find a cause, then we immediately adopt a new name to reflect that cause. Alternatively we might rename ME based on strong pathophysiological findings, in order to reflect symptomology and testing rather than causation. Or we can simply go to Ramsay's Disease, which says it all to those who know, but nothing to those who don't know anything about it.

On the other hand I have repeatedly warned that even before a new name is adopted, but only under consideration, psychogenic proponents will be pushing that its just another way to avoid calling ME a psychogenic illness. They will taint it very fast.

Now I do agree we should be using an ME definition, like the CCC or ICC. The name is more problematic.

 

[WillowJ]

I agree with all that, Alex, but I learned in school that naming after people is no longer done. It's considered too much of a bother to change the name after an appropriate interval after the person has died, and the name of a scientist tells one nothing about the disease (as if CFS does, but that's another way they didn't follow usual procedure in this case).

ME-itis does seem our best option for now until we get some more and definite science, unless we want to name it for an immune insufficiency (though that would miss the autonomic and neurological problems, but I'm not sure how to get everything into one name--I'd have to get out my word roots book and it would end up long and unpronounceable again). Too late at night to fuss with that now.

 

[Firestormm]

I was before of the opine that Ramsay's Disease - like Parkinson's - was the way to go. Maybe it still is especially with our current state of knowledge. Quite how difficult it would prove to be - renaming a disease or diseases - at this stage I don't know. Never really considered it beyond the arguments over suitability of Encephalomyelitis on forums before. But Ramsay never discovered the cause - though I am unsure if Parkinson did either - but Ramsay did attempt to define it and of course study and report on it.

Whatever way this goes - I do believe that any attempt to change the name that stems from the IOM will be most vociferously debated and opposed (if some sort of unsatisfactory hybrid is determined) on the forums. Perhaps more so than a definition.

For many reasons, a name is held to be of utmost importance among patients (including myself) and again it is perhaps a shame - though understandable - that we didn't see more discussion about alternatives in the presentation or at least attempts to overcome what we might expect to be opposition to Encephalomyelitis.

 

[justinreilly]

Alex, ME as a name is tainted in Australia and the UK, but isn't tainted in the US- noone, including doctors, have heard of it.

I think we just really need to go with ME, since it is acceptable and has all the momentum behind it. I think Ramsey's Disease and others are good too, but I really think we need to stop debating and just unite behind acceptable/good measures that have momentum that we can all agree on- ME as a name, cancel IoM contract, adopt CCC, etc. and focus all our effort on getting them adopted. Really, united, clear demands are the key.

If someone has the time they can still go and put together the case for ME-itis. We could distribute it to all panelists and encourage the experts on the panel to push for it. Theoretically and hopefully, the experts would do this themselves, but considerations of manpower to do this aside, it would be important not to leave that to chance.

Whether we have the manpower to do this is another story. However, this is a discrete enough topic that some may already be experts in it, like Lenny Jason or some patient i don't know of. That is too technical for me and I am too sick and have other things going on. I think this would be something great to pitch to the science people on the forum, Alex. If none can do it, maybe we could ask Lenny Jason to get one of his people to do it.

We are going to need to really definitively address the ME-itis case at some point soon regardless, especially if the IoM don't pick ME-itis. I say we (i.e. someone, not me ) try to get our ducks in a row now on this issue and get a clear, solid paper on the evidence together soon.

Although, this issue seems to merit taking a backseat to addressing in a paper exactly why EBM is unsuitable for this ME redef. process and we don't have anyone working on a paper yet. So, imo, "we" should start with the EBM issue.

Alex, I think you've enquired with the science people on PR about helping out with this and got nada? Is there any possible way to keep asking or ask in a new way that isn't futile? Any possible place we haven't asked yet? Could you use help asking?? Is there someone we can ask to help you ask?

You've said that the science people don't like politics so they totally avoid it. I guess the pitch would be, which you've probably tried, that we need to change the process from a political one to a scientific one and the only way to do that is to enter the actual science into the marketplace of ideas, i.e. in this case, the IoM committee, and show why it is the best existing science.

What do you guys think?

 

[alex3619]

@justinreilly, I have asked around science people, but not much here on PR. EBM does need to be tackled, but our first problem is what style of EBM. What are they using? The IOM documentation is not clear. Further, the P2P uses evidence based literature searching, and the claim was made at the public IOM meeting that it is well characterized and public. I have yet to look into this.

I have an old contact who signed the advocates letter. I want to contact him again soon, presuming I still have his contact details.

The EBM issue is not so much about the people, its about the process they are using. Capable people can still be railroaded using the process. The more choice the IOM panel has, the better. But what about the two review groups? They are an unknown.

EBM is technically not really science. Its a managerial process to translate science into clinical practice or into public health policy etc, or into simplistic "evidence" based reviews that often miss the important science. Its too much about numbers and simplification, and serious issues in the studies they use in a review can be ignored. It uses science, but is not itself a scientifically validated process.

I have started writing a blog on some of this, or perhaps a letter, or perhaps something else. Its still very early on.

 

[Ember]

Because she read Dr. Maryann Spurgin's testimony, I missed the statement by Charlotte on Salis. It's been posted here, here and here now, and it bears repeating:

“Following is the comment written and presented by Charlotte von Salis, J.D., at the Institute of Medicine meeting on January 27, 2014.”

Dear Panelists:

You’ve heard a lot today. You’ve heard from three government health agencies, you’ve heard from IOM-selected stakeholders, you’ve heard that there is a huge groundswell against this study, and you’ve heard why that is so.



The Overview of the ME/CFS Canadian Consensus Criteria (CCC), mentioned in the comment.

What can you do? You can assess this situation as scientists and physicians. Dr. Nancy Lee is on record stating that Secretary Sebelius told her a case definition is a clinical decision that has to come from the clinical community, not the Federal government. Yet you have just heard from three representatives of the Federal government. And you have been told to coordinate and work with this study’s sponsor, the NIH, through its Pathways to Prevention program. This is in direct violation of IOM’s study process and presents a blatant conflict of interest.

How is this an independent and objective process? How is this about science and medicine? If you think your task order isn’t politically motivated, consider that the CDC has been well-aware of the scientifically sound and expert-driven Canadian Consensus Criteria for over a decade — yet refuses to take down its own diagnostic and treatment guidelines, the harmful and misleading CFS Toolkit.

Your task, to develop clinical diagnostic criteria for ME and CFS, has already been accomplished. Two primers, specifically aimed at clinicians unfamiliar with the diseases, are already available. Both are based on criteria developed by disease experts and published in peer-reviewed medical journals. Both are available as easy -to-distribute pamphlets. I am referring to the Overview of the Canadian Consensus Criteria and the ME-ICC Primer for Medical Practitioners. The latter is an update of the former to reflect scientific developments through 2011.

http://paradigmchange.me/wp/wp-content/uploads/2014/01/CCC-Overview.jpg


The ME-International Consensus Panel Primer pamphlet, also mentioned in the statement.

That’s right. It’s based on science, not politics. And the combined knowledge of experts who collectively have diagnosed and/or treated more than 50,000 patients with M.E., have more than 500 years of clinical experience, have approximately 500 years of teaching experience, and have authored hundreds of peer-reviewed publications.

You cannot do better. Some of you are new to this disease. How would you feel if non-experts decided to diagnose heart failure? Or lymphoma? Or Lupus?

If you truly want to fulfill your task, all you need to do is read, share, and distribute these pamphlets. Both are available from the UK charity, Invest in M.E., and can be downloaded from a number of websites. Both can and should be distributed.

Each one of you is a unique position to do just that. Order these guidelines, print them out, or at least share the websites URLs with your networks. Use your positions to get these documents out to primary care physicians.

Tomorrow, tell the IOM to stop this needless study. Defer to the collective judgment of your eminently qualified colleagues and do your part to get the CCC officially adopted.

Resign from this panel. To do otherwise is to harm patient care and impede research.

Charlotte von Salis, J.D.

http://paradigmchange.me/wp/wp-content/uploads/2014/01/Primer.jpg

 

[Nielk]

It was brilliant and perfect as the 'closing' if all the advocates' contributions.