Next CFSAC Meeting - August 18th & 19th, 2015

[Bob]

No one mentioned Ramsay's Disease as a name, which I think is a shame. It would solve lots of problems but probably create new problems.

 

[halcyon]

It was mentioned once at the very end after someone in the audience read the WHO guidelines for naming.

 

[jimells]

Here is a summary of CFSAC recommendations and NIH response from last year:

1. Setup and support a patient registry and biobank.

Response: No. Not enough researchers and it would cost too much.

2. Issue an RFA (Request For Applications - money is set aside to fund these)

Response: No. We don't know the etiology or how to diagnose or treat the illness. And there aren't enough researchers.

So I say once again

FIRE COLLINS

 

[jimells]

It was mentioned once at the very end after someone in the audience read the WHO guidelines for naming.

Anyone care to guess which former CDC researcher is now an WHO employee giving advice on naming diseases?

Spoiler: He's very famous here

Dr Fukuda

 

[Izola]

Lyme Disease is named after a place. It's neither right nor wrong. Malaria was named centuries ago.

We're in this mess with ME because of the CDC, because they didn't recognise a cluster as being the disease named Myalgic Encephalomyelitis decades after it had already been named. They may or may not have been right. We'll never know. At one time on the CDC website, they said as much, i.e. that CFS was not ME, but it has since become conflated.

Hence we argue about this now: it's the same, no it isn't, yes it is.

ME is not a respectable diagnosis in the UK. A doctor will despise you just the same whether you call it ME or CFS. If anything more so if you insist on ME. This is in part because, as you will know, the view of ME/CFS having psychosocial components is prevalent in the UK.


I appreciate your honesty about not remembering why adopting 'encephalopathy' will lower credibility but, sorry, as an argument it doesn't cut it. There's nothing for me to agree with or refute.

There is no evidence that I am aware of for 'myelitis' in ME - and I state that as someone who has slight numbness throughout the left side of my body with occasional sudden loss of function in my left hand. 'Encephalitis' may well turn out to be an acceptable and justifiable name but we don't have enough evidence yet.

Don't misunderstand me - I'd be delighted if the historic name Myalgic Encephalomyelitis was recommended by CFSAC. The slight inaccuracy doesn't bother me. It isn't a new name. It reflects the clinical understanding of the time so your malaria example is a fair comparison. Agreed, nobody jumps up and down and gets their knickers in a twist because 'malaria' isn't medically accurate.

But I'd far rather compromise over this and take 'encephalopathy' and say thank you very much because the worrying alternative is that we are going to be stuck with CFS for ever and I don't think SEID is a whole lot better, however well intentioned.

An opportunity was missed today because too many people are not prepared to compromise.

Haven't they come to terms with the fact that CFS is not what is called by patients and in history as ME? I think, with no uncertainty, that many people diagnosed with CFS have the historic ME. Many others diagnosed with CFS have a range of diseases misdiagnosed as "CFS." CFS is a mirage. Dr. Bryan Hyde Everyone deserves a proper diagnosis.

As for "encephalopathy" It was my intent, in great part, to get information feedback. I was not arguing. Giving in to a name I suspect is not a wise choice for me. If you are going to use a medical sounding word, make sure it indicates an underlying pathology. It is a matter of being careful what you compromises to.

There is no reason to change the name Myalgic Encephalomyelitis. There is a grave reason to deal with the mixed bag tagged with CFS.

As for the name in UK Wessely and his crowd did that. They are now backing way down from the psychiatric diagnosis.

And yes, 30+ years ago to the present we could have compromised and compromised and there would be but 2 years of disability fr. insurance and social security, and a psychiatric diagnosis to boot.

They are perhaps, in the position of trying to make us say "Uncle" after we so embarrassed the NIH/CDC.

Right now, with purpose, I prefer to keep swimming upstream.

About all I can say about the parts I've read of the current public meetings is wtf. I need a map to keep the players straight.

 

[leokitten]

It was mentioned once at the very end after someone in the audience read the WHO guidelines for naming.

By WHO and ICD guidelines you are discouraged from using a person's name in the possessive for the disease. I guess disease names such as Parkinson's and Burkitt's lymphoma already existed for a long time and were so pervasive that they were excempt.

 

[jimells]

About all I can say about the parts I've read of the current public meetings is wtf. I need a map to keep the players straight.

You sure got that right. If I do this again, I'll get a telephone headset and print out a list of the CFSAC committee members with bio.

 

[Kati]

You sure got that right. If I do this again, I'll get a telephone headset and print out a list of the CFSAC committee members with bio.

That would come handy for when there is a webinar meeting which will be sometime in February.

 

[duncan]

Personally, I would recommend the committee consider, as a name for our disease, "Wessely's-Gaffe Disease."

It may serve as a cautionary note to the schmucks out there who not only got it wrong at our expense, but earned money and prestige while doing it.

For those who appreciate irony, well...

It might trigger curiosity among those unfamiliar with the disease, and perhaps even invite intellectual closure. Can you imagine explaining to an audience the background of the disease, including its name?

It could give a ceaseless source of mirth for many of us who have suffered because of the BPS school. At the very least, it might help generate a small smile from time to time.

And it would act as a reminder: Karma is a bitch.

 

[Izola]

Personally, I would recommend the committee consider, as a name for our disease, "Wessely's-Gaffe Disease."

It may serve as a cautionary note to the schmucks out there who not only got it wrong at our expense, but earned money and prestige while doing it.

For those who appreciate irony, well...

It might trigger curiosity among those unfamiliar with the disease, and perhaps even invite intellectual closure. Can you imagine explaining to an audience the background of the disease, including its name?

It could give a ceaseless source of mirth for many of us who have suffered because of the BPS school. At the very least, it might help generate a small smile from time to time.

And it would act as a reminder: Karma is a bitch.

 

[shannah]

Someone but I can't remember who, mentioned near the end of today's session that, since there were 4 members missing from the vote on whether or not to recommend the name used to be ME, perhaps they should have a phone conference in a couple of weeks with all of the members and see what the vote would be when including the 4 extra members.

Nancy Lee remarked with an analogy to the affect that she thought that would be like stacking the deck. But, after thinking about it, I don't really know why. Having those four other votes could have made all the difference in the world.

I know Jose Montoya was one of the missing. Were the others Dane Cook, Adrian Casillas and Gary Kaplan?

It could have sealed the deal one way or another.

They say they welcome feedback from viewers. Perhaps we should write in saying we like the idea. Perhaps we should write to Sue Levine instead of the list serve just in case the feedback wouldn't be relayed to the proper people

 

[halcyon]

Nancy Lee remarked with an analogy to the affect that she thought that would be like stacking the deck. But, after thinking about it, I don't really know why. Having those four other votes could have made all the difference in the world.

This was a ridiculous statement by Nancy Lee and Carol Head did a good subtle job calling her out on it.

 

[medfeb]

This was a ridiculous statement by Nancy Lee and Carol Head did a good subtle job calling her out on it.

That's right - the point was that the committee failed to reach any decision. They voted down the options presented which means that HHS will decide what to do which is likely adopt ME/CFS. What this is called is too important to be the result of a failure to decide anything

 

[halcyon]

That's right - the point was that the committee failed to reach any decision. They voted down the options presented which means that HHS will decide what to do which is likely adopt ME/CFS. What this is called is too important to be the result of a failure to decide anything

Thank you for all the great comments you made first of all.

It sounded like they were going to potentially form a working group to work on the name? And if I understood correctly, such a working group can't be formed until the next meeting? From what I could tell SEID was more or less rejected.

 

[Nielk]

Don't forget, these are just recommendations. Historically, CFSAC recommendations and future realities do not have much in common.

 

[halcyon]

Don't forget, these are just recommendations. Historically, CFSAC recommendations and future realities do not have much in common.

It's true, but it sounds like HHS adopted 'ME/CFS' based on a past CFSAC recommendation.

 

[Izola]

Don't forget, these are just recommendations. Historically, CFSAC recommendations and future realities do not have much in common.

Thank Goodness? I'm so confused. I thought CFSAC was supposed to be rooting (sp?) for us--as much as one can for a multi-idea conglomeratiom.

 

[Kati]

Don't forget, these are just recommendations. Historically, CFSAC recommendations and future realities do not have much in common.

In fact the DFO herself reminded the committee about a recommendation to the health secretary from 2010 and she was alluding they should keep on the same track so the said recommendation would not be made invalid. It speaks volume.

2010 recommendation has not made it past a recommendation, along with so many more.

 

[Forbin]

How about calling it "Disease 5000."

That's the ratio between what ME costs the US economy and what they spend on it - 5000:1.

[5046.8 to be precise - $23,972,300,000 in cost vs. $4,750,000 in research. Both numbers are from 2008.

Assuming that the cost to the economy has remained constant over the years, then sometime around 2021, ME will have cost the US Economy $1 Trillion (in 2015 dollars) since the Lake Tahoe outbreak in 1984.]

Imagine going to a financial adviser and saying "My business is losing $5000 dollars a year" and he tells you, "Don't worry, next year I'm going to spend a whole buck looking into it."

 

[Sasha]

That's right - the point was that the committee failed to reach any decision. They voted down the options presented which means that HHS will decide what to do which is likely adopt ME/CFS. What this is called is too important to be the result of a failure to decide anything

The committee were behaving as though they have all the time in the world to make a decision whereas HHS is likely to be making its decision - if it hasn't already - and will quite possibly roll it out soon. Once they've started that process I can't see them accepting another name until there's a greater evidence base. It's now or never, I'd have thought, for the next few years.