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IOM ME/CFS project webpage - sign up to the IOM email list

Bob

Senior Member
Messages
16,455
Location
England (south coast)
It's possible to sign up to the IOM's email list, to receive information relating to the ME/CFS project, on the following webpage (You can enter your details at the bottom of the webpage):
http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome.aspx

(I hope I'm not duplicating information - I haven't seen this posted anywhere on the forum yet.)

The webpage also includes the project's email address, and the following information:

Activity Description
An Institute of Medicine (IOM) committee will comprehensively evaluate the current criteria for the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The committee will consider the various existing definitions and recommend clinical diagnostic criteria for the disorder to address the needs of health providers, patients, and their caregivers.



The committee will also distinguish between disease subgroups, develop a plan for updating the new criteria, and make recommendations for its implementation. Any recommendations made by the committee will consider unique diagnostic issues facing people with ME/CFS, specifically related to: gender, across the lifespan, and specific subgroups with substantial disability.

Specifically the IOM will:

  • Conduct a study to identify the evidence for various diagnostic clinical criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients;
  • Develop evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians, using a consensus-building methodology;
  • Recommend whether new terminology for ME/CFS should be adopted;
  • Develop an outreach strategy to disseminate the definition nationwide to health professionals.


The committee will produce a consensus report with recommendations. The recommendations will have a domestic focus, however, major international issues may be identified. As the committee reviews the literature, efforts that have already been completed on this topic area will be considered, including the 2003ME/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. In an effort to minimize overlap and maximize synergy, the committee will seek input from the NIH Evidence-based Methodology Workshop for ME/CFS.
 
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Ember

Senior Member
Messages
2,115
It's possible to sign up to the IOM's email list, to receive information relating to the ME/CFS project, on the following webpage (You can enter your details at the bottom of the webpage)....
I wouldn't dignify this contract with such a request! :mad:
 

SOC

Senior Member
Messages
7,849
There's that damned "consensus" word again. Can you imagine what kind of consensus can be achieved if the BPS folks are at the table? Is it really possible to achieve a common agreement about this illness between the BPS crowd and those who believe this is definitely NOT a psychiatric illness?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
There's that damned "consensus" word again. Can you imagine what kind of consensus can be achieved if the BPS folks are at the table? Is it really possible to achieve a common agreement about this illness between the BPS crowd and those who believe this is definitely NOT a psychiatric illness?
Yes, the 'consensus' word struck me in exactly the same way, when I read their webpage.
In this context 'consensus' means the lowest common denominator, and it means that we should expect nothing from this process.
 
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Nielk

Senior Member
Messages
6,970
I just noticed that the project sponsors are DHHS and Social Security Administration. Does that mean that SSA paid for this?

As far as "consensus study" is concerned, the work the IOM did on Gulf War Illness treatment was also a "consensus study".
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I just noticed that the project sponsors are DHHS and Social Security Administration. Does that mean that SSA paid for this?

That's weird. I swear when I looked at it a couple of days ago it said NIH.

Yes, I can't think of any other meaning for sponsor in this context than who paid for it.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
There's that damned "consensus" word again. Can you imagine what kind of consensus can be achieved if the BPS folks are at the table? Is it really possible to achieve a common agreement about this illness between the BPS crowd and those who believe this is definitely NOT a psychiatric illness?

Consensus with people who have a very inflexible viewpoint ("this is not negotiable") inevitably results in either a failure of the consensus process or giving in to them.
 

Nielk

Senior Member
Messages
6,970
That's weird. I swear when I looked at it a couple of days ago it said NIH.

Yes, I can't think of any other meaning for sponsor in this context than who paid for it.

It is odd isn't it? What does this have to do with SSA, except the fact that they would be willing to spend one million dollars in order to save billions is possible disability payouts?
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Funny how 'consensus' was supported when used by the experts including those experts who wrote the ICCME of which very little if anything has been heard or talked about; and yet not so many months ago - it was ICCME or nothing - and the CCC was deemed second-best.

I dare say, you all feel, consensus is not so much a 'dirty word' when the experts you support wholeheartedly are thought to have employed it in support of the CCC, and yet perhaps even in this context the experts were making a 'compromise'.

In any forum, even one that seeks votes, it will ever be the greater vote that is deemed the consensus. I wonder who considered consensus in the context of the expert letter - was this term used within the letter or by those advocates who advanced the letter as a 'consensus' view? I forget.
 

Nielk

Senior Member
Messages
6,970
Funny how 'consensus' was supported when used by the experts including those experts who wrote the ICCME of which very little if anything has been heard or talked about; and yet not so many months ago - it was ICCME or nothing - and the CCC was deemed second-best.

I dare say, you all feel, consensus is not so much a 'dirty word' when the experts you support wholeheartedly are thought to have employed it in support of the CCC, and yet perhaps even in this context the experts were making a 'compromise'.

In any forum, even one that seeks votes, it will ever be the greater vote that is deemed the consensus. I wonder who considered consensus in the context of the expert letter - was this term used within the letter or by those advocates who advanced the letter as a 'consensus' view? I forget.

I'm not sure I understand your question, @Russell?
 

Iquitos

Senior Member
Messages
513
Location
Colorado
Funny how 'consensus' was supported when used by the experts including those experts who wrote the ICCME of which very little if anything has been heard or talked about; and yet not so many months ago - it was ICCME or nothing - and the CCC was deemed second-best.

I dare say, you all feel, consensus is not so much a 'dirty word' when the experts you support wholeheartedly are thought to have employed it in support of the CCC, and yet perhaps even in this context the experts were making a 'compromise'.

In any forum, even one that seeks votes, it will ever be the greater vote that is deemed the consensus. I wonder who considered consensus in the context of the expert letter - was this term used within the letter or by those advocates who advanced the letter as a 'consensus' view? I forget.

Nothing funny about it. "Consensus" as used by the IOM means one thing (my way or the highway?) as Alex explained. Consensus as a method of reaching agreement was described in detail in the ICCME document; those producers were intent on doing the best job they could for patients, clinicians and researchers.

IOM, on the other hand, has a history of trying to propagandize the patient, clinician and research world to believe that ME/CFS (and Gulf War Illness) are psychosomatic. Having just one of those psych/insurance lobbyists in the group would make consensus impossible in any practical sense of the word.

IOM uses the word "consensus" as a way to razzle and dazzle the naive with BS and as a way of concealing their real motives. Should a Congressional aide look into a complaint, for instance, the language will look reasonable and the IOM will claim their detractors have no basis for objection.

The bona fide researchers/clinicians who produced the CCC and the ICCME were not trying to fool anybody. In fact, they are trying to fight the deception that is coming from the IOM.

Consensus is not being called a "dirty word" here. It's the source of the semantic manipulation that is "dirty": IOM.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Funny how 'consensus' was supported when used by the experts including those experts who wrote the ICCME of which very little if anything has been heard or talked about; and yet not so many months ago - it was ICCME or nothing - and the CCC was deemed second-best.

I dare say, you all feel, consensus is not so much a 'dirty word' when the experts you support wholeheartedly are thought to have employed it in support of the CCC, and yet perhaps even in this context the experts were making a 'compromise'.

In any forum, even one that seeks votes, it will ever be the greater vote that is deemed the consensus. I wonder who considered consensus in the context of the expert letter - was this term used within the letter or by those advocates who advanced the letter as a 'consensus' view? I forget.

Consensus is actually in opposition to democracy. Consensus can be a good thing or a bad thing, depending on the methodology used. Democracy is faster. Consensus brings more support than democracy, at least usually. Consensus is not the way to advance science, but its the way to get decisions made. Science has to operate in the real world, and consensus is sometimes used to help that happen. In the case of the HHS-IOM contract they started by breaking trust, following several different histories of trust breaking, and continue in a tradition which is known to make decisions that are highly dubious.

Consensus is good if the process is good, but its slow and its not actually science. Consensus is bad if the process is bad, and can be used to "manage" situations rather than obtain optimal outcomes.
 

Iquitos

Senior Member
Messages
513
Location
Colorado
I wouldn't dignify this contract with such a request! :mad:

I can understand that sentiment but, on the other hand, it might be that knowing certain members of the "public" are interested and are watching might, just might, have some benefit. At least, it's one way of finding out what they are up to, at the least the part that they conduct in sunlight.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The Silent State is a book that discusses managing public perception in the UK. On some issues various agencies take a view that what is actually going on is not important, what is important is how its perceived. So they spend a fortune on public relations, money that could have gone toward actually solving problems.

What we see, what we are told and what is actually going on are not necessarily the same thing. This is not some conspiracy. Its modern managed public relations ... business as usual.

Our former Foreign Minister, Bob Carr, said something related to this the other night. He was asked if he thought intelligence agencies told the truth, or something to that effect, I no longer recall the details. He replied that there is always some doubt about what any intelligence agency says, iirc. The attitude seems to be its OK to lie or do something underhanded, but consideration must be given to consequences if caught.

Doubt is good if there is a reason for some agency to conceal information, and various agencies (of which intelligence agencies are an extreme example) like to manage perception.

When any agency begins by concealing information (such as operating in secrecy), and continues with concealing information, a dose of cynicism is warranted. Public health advances and programs should be transparent and accountable. It seems this HHS-IOM contract is zero for two so far. Only in historical time will we be sure the information they release is adequate to assess what is going on. Hindsight will tell us. Looking forward we can only make risk assessments.

I just looked up the exact Bob Carr quote: "...I don't think people in this country or in the United States or anywhere else should implicitly trust or accept the assurances they're receiving from their security and intelligence agencies." http://www.abc.net.au/lateline/content/2013/s3881665.htm
 
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Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I'm not sure I understand your question, @Russell?

In the letter from the experts, did they use the word 'consensus', or was it used subsequently to describe the actions of those experts?

I was wondering why those who wrote/supported the ICCME were now supporting the CCC and there had been little discussion about it.
 

Nielk

Senior Member
Messages
6,970
In the letter from the experts, did they use the word 'consensus', or was it used subsequently to describe the actions of those experts?

I was wondering why those who wrote/supported the ICCME were now supporting the CCC and there had been little discussion about it.

They did use the word 'consensus' in their letter:

Dear Secretary Sebelius,

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.

I understood 'consensus' in this case, meaning each and every signatory has agreed. The signatories certainly had a choice whether they wanted to sign on with this...or not. They further had a second chance (with the second letter) to add or remove their signature to it. One chose to back out and sixteen new signatories joined in.

One reason they give for adopting the CCC is that it has been endorsed by the IACFSME in their Primer for Clinical Practitioners.

They experts' letter further states:

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). As
leading researchers and clinicians in the field, however, we are in agreement that there is
sufficient evidence and experience to adopt the CCC now for research and clinical purposes,
and that failure to do so will significantly impede research and harm patient care. This step will
facilitate our efforts to define the biomarkers, which will be used to further refine the case
definition in the future.

What would be the reason not to adopt the CCC now?
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
What would be the reason not to adopt the CCC now?

That, is a very good question, and one worth considering in advance of the IOM considering it I think and as part of the larger picture. As advocates I think you should now be looking at the bigger picture. Why did NICE reject - in the main - the CCC? Why might IOM? Can the CCC be operationalised? Etc.

The IOM will - in their fashion - take on board all the issues (if they are aware of the issues) relevant to their task including existing criteria, and issues pertaining to the name, and arrive at a consensus among themselves: themselves being those on the panel.

The consensus will be a decision, a recommendation embracing the issues they have been charged with looking at: and that recommendation will then go back to HHS for consideration.

We do need more information, but I think we can and should do more in terms of preparation than some are perhaps doing now i.e. simply opposing the contract and endorsing the CCC without exception.

As I said to you before, a review of the situation in the US as it stands now, in terms of diagnosis, in terms of testing, in light of seeing any one expert and receiving a diagnosis based on their opinion perhaps and not based on a universal criteria, in terms of Fukuda and the CDC standing advice - a consideration of what is wrong with it and what is right; consideration of NICE - what is wrong with it and what you might like to see from it in the US e.g. specialist centres for diagnosis and illness management perhaps or specific funding for specialist centres.

You have the UK model to make of what you will. NICE I recall made much of one of the Australian criteria. You have scientific evidence in terms of research - though the lack of replication and significance remains a key issue... Hopeful research is worth a mention but I doubt it will get you very far...

I think - as I said - advocates need to be thinking in terms of being stakeholders, in terms of preparing evidence like that we saw with the Independent Working Group's Report to The Chief Medical Officer, which formed the basis of the NICE Guideline.

You may well say, 'well being a stakeholder in the UK led to the ME Association finding the NICE Guideline 'unfit for purpose'' and you'd be right, but contributing and being a part of the process, doesn't mean you have to endorse wholeheartedly the outcome. It does mean that the committee are more aware of patient concerns and other matters that may not have formed part of their decision-making had you not been present.

Once something like the operationalised NICE Guideline is produced in the US, then begins the process of trying to improve upon it as science and clinical evidence grows. Something will happen in the US along the lines of NICE: of that I am fairly certain.

Instead of lamenting the fact there is no place at the table, I think you might campaign for a place at the table; and if you can't get the place that you want for the people you want - then take a deep breath and lobby those who do have a place at the table: or work with them.

Consensus = compromise I think but compromise doesn't mean the end of things. How many years have you all lamented the Fukuda criteria and the lack of provision and recognition in the US? This might not be the opportunity you wanted - you may have wanted more - but it is what you have: time perhaps to make the most of it.

$1 million is $1 million. You might think it's wasted here. I would want to try and ensure they make ever $ count.

Then again, if you think the CCC is enough. If you think the CCC can be operationalised. If you think that the experts who signed that letter really have the answers. Then I'm probably wasting my breath.
 

Nielk

Senior Member
Messages
6,970
@Russell,

I can certainly understand how one might desire for the IOM contract to be cancelled and at the same time, attempt to have a ‘seat’ at the table. It makes logical sense – ‘damage control’. I would normally support that, except…

The problem is that we can’t look at this action in a vacuum.


As @asleep so very well outlined:



Why Is This Contract Bad?
Patients are opposed to this contract for many reasons:

  • The great haste and secrecy with which the HHS has set up this contract, which has precluded patient input and timely objection and belies an ulterior motive.
  • The precedent set by a similar IOM contract for Gulf War Illness (GWI): The result was a costly panel consisting entirely of non-experts and psychologically-biased participants that ignored research on biological abnormalities and redefined GWI as Chronic Multisymptom Illness (CMI), officially recommending only psychological interventions for a devastating physical disease.
  • The IOM’s infatuation with evidence-based medicine (EBM), while laudable in some ways, is inappropriate for the task. EBM is inadequate when confronted with medical ambiguity and will likely serve as a filter that overstates the value of pseudoscientific psychogenic research due to its disproportionately biased funding, as was the case with GWI.
  • The IOM’s stated commitment to disallowing “biased” panel members will plausibly be used to exclude expert CFS clinicians and researchers.
  • The disrespectful refusal of the HHS to acknowledge or respond to the joint objection from CFS experts.
  • The deliberate circumventing of the CFSAC recommendations by the HHS.
  • The estimated cost of the contract ($1 million plus) is a waste of the limited and inadequate taxpayer resources allocated to CFS.
  • The general mistreatment and marginalization that CFS patients have endured from the HHS over the past 30 years.

We can’t ignore the two main components – the contract and the venue.


The contract has been ill devised without any input from stakeholders. The venue chosen is not an appropriate venue for definition building for diseases. The problem is all in the details and the 50 expert clinicians and researchers understand this. That is why they decided to make a strong statement with their open letter to HHS.


Once the process is started and is allowed to continue, the best we can hope for is for our advocates and experts to testify on the day that they will have an open meeting enabling us to do that.


If you will look into the process of study by the Institute of Medicine, you will realize that they are an independent, private non for profit organization. They pride themselves on their independent, unbiased reports that they deliver. They have a specific process of how they proceed with this and there is no allowance for patients, advocates or the CAA to challenge them or influence the. They are a rock of an organization and that is why they are so well respected.

Patient advocates and our experts are very well aware of that. That is why we are fighting so hard to reverse this process.


In my opinion, all the calls for co-operation, moderation, seeking a seat at the table, just serves to weaken our position. How much pressure do you think they are feeling to cancel this when we propose to them on a platter how we will work with them?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I dare say, you all feel, consensus is not so much a 'dirty word' when the experts you support wholeheartedly are thought to have employed it in support of the CCC, and yet perhaps even in this context the experts were making a 'compromise'.

Not all of us have promoted the CCC or ICC on the basis that they were created by consensus. I don't remember doing so myself. I've advocated promoting the CCC because I think it is a fair representation of ME, and because I think it can usefully define a subset for research.

The discussions re the IOM are not exclusively focused on whether a process of 'consensus' is the best way to proceed, but we are more focused on the entire context of the decision making process.

The CCC and ICC were created by experts in the field whose views many of us tend to agree with. Therefore, many of us would be more likely to concur with a consensus between those experts.

But the IOM process will employ non-experts: People who aren't familiar with ME/CFS.

It's possible that the IOM panel members will consider the psychological research, and hear from 'experts' who promote the psychological interpretations, and then will conclude that CFS/ME is a ill-defined heterogeneous multiple-symptom illness, that is treatable with CBT/GET, and that there is a lack of consensus with regard to its nature and aetiology (i.e. whether it's psychological or biomedical in origin.) Without a deep understanding of the history of the illness, and without a deep insight into the nature of ME/CFS, it will be easy for the panel to misunderstand and misinterpret important issues.

If you ask a group of free-market capitalists to define the best socio-economic model by consensus then it's quite predicable what their findings will be, but many won't agree with their conclusions. Likewise, if you ask the same from a group of socialists, then they will come up with a different model which many won't agree with.

So it's all about context.
 
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