"Please Don't Let it Die" by Tina Tidmore

[Ember]

I have chaired Delphi type meetings and what happens is that the majority views on things prevail.... The process naturally ends up reflecting the majority but rare is it that that view is held by everyone.

The chair wields significant power, and if he favours a majority decision, then he's likely to get a majority decision. The IOM uses a face-to-face meetings. Dr. Bateman describes their process:

The IOM is respected in part because of its adherence to a process with high standards. The IOM process is not a transparent, publicly interactive or open process; it is a confidential, internally interactive, collaborative and “consensus building methodology” that was an intellectual and interpersonal challenge for those entrusted with the task.

A Delphi-type process removes the interpersonal challenge: there is no face-to-face interaction; each participant is given time for thought and an equal opportunity to contribute; and in particular, disagreements are used to generate pooled information and increased understanding. Why would you challenge the International Consensus Panel's claim that “the authors, representing twelve countries, reached 100% consensus through a Delphi-type process?" I question whether the IOM Committee achieved 100% consensus based on Dr. Klimas' concurrent presentation to the P2P Panel.

According to their report, the IOM Committee adapted a “GRADE grid” to facilitate its consensus discussions. The inconsistent application of the Committee's resulting conclusions provides a measure of the IOM consensus process.

“The committee adapted a 'GRADE grid' to record individual judgments as to whether there is sufficient evidence that certain symptoms and abnormalities define either ME/CFS or a particular subtype of ME/CFS:”

For each symptom or category of symptoms below, please mark with an “X” the cell that best corresponds to your assessment of the available evidence in terms of benefits versus disadvantages for inclusion as a core ore required symptom.

Balance between desirable and undesirable effects of inclusion as a required or core symptom or symptom category. Desirable consequence: The specific symptom or symptom category is present in a majority of ME/CFS patients, and its requirement could prevent incorrect diagnoses of ME/CFS in those that do not have it.

Undesirable consequence: The specific symptom or symptom category is not present in a majority of ME/CFS patients, and its requirement could thus exclude patients with ME/CFS from diagnosis.

The larger the difference between the desirable and undesirable effects, the more likely a strong recommendation is warranted. The narrower the gradient, the more likely a weak recommendation is warranted.

Quality of evidence: The higher the quality of evidence, the more likely a strong recommendation is warranted.

“The collated judgments were used to facilitate further discussion, which led to consensus among the committee members on final recommendations regarding diagnostic criteria;”

“Conclusion: There is sufficient evidence that fatigue in ME/CFS is profound, not the result of ongoing excessive exertion, and not substantially alleviated by rest. This fatigue results in a substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities and persists for more than 6 months;”

“Conclusion: There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS from other conditions;”

“Conclusion: Despite the absence of an objective alteration in sleep architecture, the data are strong that the complaint of unrefreshing sleep is universal among patients with ME/CFS when questions about sleep specifically address this issue. While PSG is not required to diagnose ME/CFS, its use to screen for treatable sleep disorders when indicated is appropriate. Diagnosis of a primary sleep disorder does not rule out a diagnosis of ME/CFS;”

“Conclusion: There is sufficient evidence that slowed information processing is common in patients with ME/CFS, and a growing body of evidence shows that it may play a central role in overall neurocognitive impairment associated with the disease. Such a deficit may be responsible for the disability that results in loss of employment and loss of functional capacity in social environments;”

“Conclusion: Sufficient evidence indicates a high prevalence of orthostatic intolerance in ME/CFS, as measured by objective heart rate and blood pressure abnormalities during standing or head- up tilt testing or by patient-reported exacerbation of orthostatic symptoms with standing in day-to-day life. These findings indicate that orthostatic intolerance is a common and clinically important finding in ME/CFS;”

“Conclusion: The committee elected not to include pain as a required element of its recommended diagnostic criteria for ME/CFS:”

“Conclusion: Sufficient evidence supports the finding of immune dysfunction in ME/CFS:”

“Conclusion: Evidence is insufficient to conclude that any specific neuroendocrine abnormalities cause ME/CFS, or that any such abnormalities either uniformly differentiate those with ME/CFS from individuals with other illnesses or distinguish a subset of ME/ CSF patients;”

“Conclusion: There is sufficient evidence suggesting that ME/CFS follows infection with EBV and possibly other specific infections;”

“Conclusion: There is sufficient evidence that orthostatic intolerance and autonomic dysfunction are common in pediatric ME/CFS; that neurocognitive abnormalities emerge when pediatric ME/CFS patients are tested under conditions of orthostatic stress or distraction; and that there is a high prevalence of profound fatigue, unrefreshing sleep, and post-exertional exacerbation of symptoms in these patients. There also is sufficient evidence that pediatric ME/CFS can follow acute infectious mononucleosis and EBV.”

By what consistent criteria were core symptoms differentiated from symptoms not considered core? What happened in this process to the identification of subtypes?

 

[usedtobeperkytina]

Alex, you make some good points.

 

[Nielk]

However the IOM report gives us the basis, within political authoritative terms, to say there is weight and merit behind increasing funding and research, and educating the medical community so that we have more doctors who know enough to be useful.

There is certainly a great need in educating doctors but, the question remains; educating them about ME or SEID? The same concern is with the much needed funding; what type of research studies will be funded and which criteria wll be used?

 

[Bob]

The reason cannot be that all diseases are defined by HHS so they could not let the medical community define this disease. The opposite is true! Diseases are defined by the medical experts in this country.

Then why don't you simply seek recognition for ME and the ICC? If you did that then I would support your advocacy efforts.

 

[Undisclosed]

This thread is being closed as it contains some rule breaches. It will be re-opened after the breaches have been removed.

Thank you.

This thread in now open.

Please avoid directing personal attacks at other members who don't agree with you.

Thank you.

 

[usedtobeperkytina]

Well, I Googled my name, and this old thread came up. I decided to take a read, now almost 2 years later.

It seems that the CFSAC recommended the SEID criteria, but not the new name. The CDC is working on implementation with a workgroup.

So my frustration has not moved to part of what I predicted coming true: status quo on our disease still being called "chronic fatigue syndrome." I wonder how much advancement in doctors understanding the disease will happen, even with a new criteria, if it has the same name. Besides doctors, the bad name has an impact in public and government official perceptions.

So, I also advocate for accepting the new name, despite that many patients are against it. The reason is the same: it's not perfect, but it's close, and it can bring progress instead of leaving us with the bad status quo. "ME" alone, being mainstreamed as the name, is not a viable option. Even the CFSAC couldn't agree to recommend that, and they stated some good reasons from a clinician's viewpoint.

Here's my latest blog on the name: http://mecfsfromme.blogspot.com/2017/01/its-name-name-name.html

 

[Butydoc]

Well, I Googled my name, and this old thread came up. I decided to take a read, now almost 2 years later.

It seems that the CFSAC recommended the SEID criteria, but not the new name. The CDC is working on implementation with a workgroup.

So my frustration has not moved to part of what I predicted coming true: status quo on our disease still being called "chronic fatigue syndrome." I wonder how much advancement in doctors understanding the disease will happen, even with a new criteria, if it has the same name. Besides doctors, the bad name has an impact in public and government official perceptions.

So, I also advocate for accepting the new name, despite that many patients are against it. The reason is the same: it's not perfect, but it's close, and it can bring progress instead of leaving us with the bad status quo. "ME" alone, being mainstreamed as the name, is not a viable option. Even the CFSAC couldn't agree to recommend that, and they stated some good reasons from a clinician's viewpoint.

Here's my latest blog on the name: http://mecfsfromme.blogspot.com/2017/01/its-name-name-name.html

Hi Usedtobeperkytina,

I'm am also frustrated with the advocacy that undermined the S.E.I.D.name. Functionally CFS is still being used by most. It appears our community of CFS/ME/SEID sufferers still don't have a name which is universally accepted to describe their disease to their families, friends and doctors. As a doctor, I feel this has slowed the process of educating other doctors about this disease which is probably to the detriment of the patients seeking care.

 

[usedtobeperkytina]

Thank you, Butydoc, for saying so.

 

[Snow Leopard]

It appears our community of CFS/ME/SEID sufferers still don't have a name which is universally accepted to describe their disease to their families, friends and doctors. As a doctor, I feel this has slowed the process of educating other doctors about this disease which is probably to the detriment of the patients seeking care.

Maybe the doctors should have asked us before foisting various unpopular names on us? Just saying.

 

[Butydoc]

Maybe the doctors should have asked us before foisting various unpopular names on us? Just saying.

I'm not sure asking a group of patients how to name a disease that themselves are not in agreement would be useful. I guess more importantly, maybe the correct question is weather this controversy has moved the ball forward or obstructive it's progress.

 

[Nielk]

I'm not sure asking a group of patients how to name a disease that themselves are not in agreement would be useful. I guess more importantly, maybe the correct question is weather this controversy has moved the ball forward or obstructive it's progress.

Which controversy?

 

[Snow Leopard]

I'm not sure asking a group of patients how to name a disease that themselves are not in agreement would be useful. I guess more importantly, maybe the correct question is weather this controversy has moved the ball forward or obstructive it's progress.

I don't think you understand. I'm not talking about consensus, I'm saying we need to ask what the needs of the patients are, how they feel about particular names etc. If you don't do that, then the proposed names are almost certainly going to be horrible. The major problem is that given the lack of understanding of the pathology (and therefore a name derived from the pathology), medical authorities want to name the illness after the symptoms - most patients do not want a name based purely on the symptoms as this trivialises the disease.

My personal opinion is that a name like Ramsay's Disease is much more appropriate - it doesn't propose pathology that doesn't exist, it doesn't mischaracterise symptoms and it doesn't sound trivial. Yet it is appropriate as he was among the first to characterise the symptoms and of this type of illness onset in medical journals.

The WHO and the like should take a backseat when it comes to naming - patients needs come first, not the preference of doctors!!!!!!