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

[Kati]

I don't know if you can see FB, Kati?

https://www.facebook.com/canaryfilm/posts/600975450040192

Thank you, yes I saw that. Very powerful. I tweeted about it.

 

[leokitten]

I thought you were a woman because your username is 'kitten'...

Bit of a shock there.

I came up with it as a play on words 'leo' meaning lion and then adding kitten. Honestly I don't know what I was thinking but it was during the worst part of my illness when I signed up to PR so forgive me

 

[Cheshire]

 

[Sasha]

I came up with it as a play on words 'leo' meaning lion and then adding kitten. Honestly I don't know what I was thinking but it was during the worst part of my illness when I signed up to PR so forgive me

Well, I ended up looking like a daisy so I'm in no position to talk.

 

[Bob]

I came up with it as a play on words 'leo' meaning lion and then adding kitten. Honestly I don't know what I was thinking but it was during the worst part of my illness when I signed up to PR so forgive me

No explanations re usernames are needed! We chose a random name, thinking we won't use the forum much, and then end up being part of the furniture, regretting our usernames evermore! I'm not sure what mine says about me! Very unimaginative?

Edit: BTW, i'm female, in case anyone was wondering. Hehehe... (Do i hear you all saying "He is joking, isn't he?!?")

 

[waiting]

No. Their job is to deny applications, 'cause it's a psychosomatic disease. That's why they put psychobabblers on the panel.

I hope it wasn't deliberate.

Was Lipkin's experience with that one panel member through the SEP, specifically? If so, that panel member's misunderstanding of ME as a psychosomatic illness contradicts the entire point of the SEP.

 

[Scarecrow]

I came up with it as a play on words 'leo' meaning lion and then adding kitten. Honestly I don't know what I was thinking but it was during the worst part of my illness when I signed up to PR so forgive me

Don't apologise. Embrace your inner kitten.

Perhaps you should find a really butch avatar to replace your default internationally recognisable symbol of maleness?

 

[Izola]

They're now talking about the name. Here's their proposal (not yet discussed)
View attachment 12221

There have been discussions, I remember, from some years ago, that the name "encephalopathy" , unlike, "encephalomyelitis" has negative connotations, given our fight to get ME/cfs accepted as "real" diseases. I'm sorry my brain is now always in a state of failure.

I think the issue has to do with the difference between a disease and a "sate of feeling like" symptoms. I'm sorry, that is the best I can do with what's left of my grey matter. I hope that might jog some else's memory who has a better brain. iz

 

[Sasha]

default internationally recognisable symbol of maleness?

Never even saw that...

 

[A.B.]

I have only been able to follow some parts. Some of what I saw today was encouraging, so I would like to know more. What came out of all these discussions?

 

[jimells]

After the shortened comment period Dr Newton presented the patient registry workgroup recommendation. Basically they want to make sure that a central registry is built and that all future research utilize and add to the registry. They tried this before, but HHS said No, of course. I forget the lame excuse.

"We don't want to make a recommendation that won't be supported." I don't know who said this, but if they really believe this the committee might as well just pack up and go home now.

They spent a lot of time speculating over the best way to convince HHS to support this, and speculating over just how to implement their goal. I've noticed they spend a lot of time in the weeds. Aren't they supposed to be advising on policy, not technical details?

The Name Issue - Part 42
Committee members are not fans of the new name. SEID has been poorly received or rejected by the community. ME has the broadest support among patients.

Betsy Keller of the IOM panel said, "A lot of names make no sense but we accept them."

The ICD10-CM (modified for Uncle Sam) says CFS and ME are synonymous and exclusionary at the same time. Huh? Obviously that is a logical impossibility.

"Will the physicians reject ME as a name?" The response was, "This is an opportunity to educate them". Doctors are willing to learn about ME but dismiss CFS. Someone asserts a name with "-itis" will encourage doctors "to order spinal MRIs to look for the lesions". (I hope doctors deal with disease based on their knowledge of the illness and not on the name. But maybe that is naive.)

Dr Fletcher said that patients around the world will appreciate adopting ME as the name. She is adamant about ME as the name.

"What about ME/SEID?" (I could hear the silent groan through the telephone)

I don't know who said this, but is sure got my attention:

Malcolm Hopper (UK clinician and/or researcher, I can't remember which) says an IOM panel member told him that they were under orders not to use ME as the name.

There was a vote on the recommendation to use ME; I think it failed to pass, but I couldn't tell. They really need to adopt Roberts Rules of Order and use a more formal process so everyone (including committee members) know what the hell is going on. Plus they could keep the agenda moving along. Informal is great for subcommittees but public meetings need to be run a little more formally.

After Lunch
How to cram giant round ME peg into tiny NIH square hole? Well obviously one has to make the hole bigger, doh. There is discussion of the very high rate of grant rejection by NIH.

It was about this time that the meeting saw a photo of a headstone with the words,

I told you I was sick

This was the headstone of Charlene (?) Irvine who committed suicide earlier this year after many years of illness.

Committee’s consideration of Questions from HHS
This was presented by Nancy Lee. It felt odd how she kept using the royal "We" to refer to HHS while also serving on the committee. I can't describe why - it just felt wrong somehow.

HHS wants CFSAC to tell HHS how to disseminate the new definition. I don't understand this at all. Isn't medical education a primary goal of CDC? Why would CFSAC be an expert in this area? There is much time spent speculating on medical education and how to do this. I couldn't make out what the committee's response is to this question.

This part of the meeting is so tedious to listen to I just want SCREAM. Sorry. I feel better now. How can people actually sit through eight hours of meetings in one day?

There was a brief discussion of Recommendation #6 from yesterday. The recommendation is for a federal cross-agency leader - I can't remember exactly what their duties would be, but yesterday they kept using the tile "Czar". I've never understood why officials in the US think it's a good idea to name a position after the title for Russian monarchs. I guess they prefer dictators over democracy.

The Name Issue - Part 43
HHS question # 3 is, should SEID be adopted across all HHS agencies? If not, what name should be used?

After much discussion, they voted to reject the name SEID (yay). They also voted to reject ME as the name.

The Name Issue - Part 44
They just can't get away from the name issue. Now there is more tedious discussion of which name to put in their other recommendations.

By this time in the meeting I just couldn't take it any more and hung up. I got two cauliflower ears from the telephone. Whew. I need a rest...

 

[Izola]

Why don't they just take the sensible approach and go for encephalopathy? It's neutral and correct.

The historic Myalgic Encephalomyelitis won't have to be explained or argued and it is universally recognized like Lyme and Malaria who aren't scientifically correct.

Those of us who are literally wasting away from the pain and disintegration of the disease plus all the "social disgrace" battering caused by demeaning made-up names, won't have to feel the additional pain of a "new" name reminding us again of past insults, loss of friends and family and more money spent on arguing names than scientific research.

Again, I remember that the name "Encephalopathy" will notch down our credibility but I can't remember exactly why.

I am sorry I can't make my argument better, but that is what Myalgic Encephalomyelitis does to us some 29 years in without adequate treatment, friends or family.

 

[jimells]

I hope it wasn't deliberate.

Was Lipkin's experience with that one panel member through the SEP, specifically? If so, that panel member's misunderstanding of ME as a psychosomatic illness contradicts the entire point of the SEP.

Now you're catching on...

 

[Denise]

I believe that when Lipkin's applications were denied they had gone through review in institutes - NOT as part of the ME/cfs SEP review.

 

[waiting]

Now you're catching on...

I guess I was just stating the obvious.

Whether it was through the SEP or not, I think we all understood why Lipkin reported this information to a journalist in the first place.

 

[waiting]

For whoever was asking about the slides, Nancy Lee said anyone (?) can email the CFSAC & they will send the PowerPoint slides.

There was some issue about getting them into an acceptable/approved format for the CFSAC website.

IF I am recalling that correctly...

 

[jimells]

I believe that when Lipkin's applications were denied they had gone through review in institutes - NOT as part of the ME/cfs SEP review.

You may very well be correct. It sure is hard to tell the players without a scorecard, especially when the game is played in the dark.

 

[Izola]

Well, I ended up looking like a daisy so I'm in no position to talk.

I ended up looking like a plain unimpressive daisy [apology to the one(s) who chose it] because my limited vision and habit of focusing on the written word caused me to overlook the international sign of male and femaleness. BTW, why is that so important?

I know, I could change my avatar. I will, maybe.

 

[Scarecrow]

The historic Myalgic Encephalomyelitis won't have to be explained or argued and it is universally recognized like Lyme and Malaria who aren't scientifically correct.

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.

Those of us who are literally wasting away from the pain and disintegration of the disease plus all the "social disgrace" battering caused by demeaning made-up names, won't have to feel the additional pain of a "new" name reminding us again of past insults, loss of friends and family and more money spent on arguing names than scientific research.

Again, I remember that the name "Encephalopathy" will notch down our credibility but I can't remember exactly why.

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.

 

[jimells]

Here is what Jennie Spotila wrote earlier this year regarding 2014 grants and the SEP:

Every single funded grant was reviewed by the CFS Special Emphasis Panel, although that does not mean that every single ME/CFS application received by NIH was sent to that Panel. I think it is pretty likely though, unless an applicant requested and justified sending the application to a different study section.