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Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

Sasha

Fine, thank you
Messages
17,863
Location
UK
If she had true integrity she would have read the complete recommendation for those who were listening and weren't aware of the full recommendation.

Why? This was an advocacy event to ask for more funding, a more appropriate research home than the Office of Research into Women's Health, and better education for doctors so that patients can get care.

It wasn't a platform to revisit the entire process.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
If she had true integrity she would have read the complete recommendation for those who were listening and weren't aware of the full recommendation.
I don't think we can ask for more integrity than that demonstrated by Dr Ellen Clayton. She's been honest and upfront about the process all along. If we're going to start trashing the integrity of our friends and best advocates, then we're really scraping the bottom of the barrel, in terms of advocacy, and we're in a lot of trouble.
 

Cheshire

Senior Member
Messages
1,129
If she had true integrity she would have read the complete recommendation for those who were listening and weren't aware of the full recommendation.

Each panel member knew very well that they were acting against stakeholders wishes.


I can understand your being upset by the whole process of P2P and IOM report, the new name or criteria.
But questionning her integrity and commitment is really dubious.
 
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Nielk

Senior Member
Messages
6,970
I don't think we can ask for more integrity than that demonstrated by Dr Ellen Clayton. She's been honest and upfront about the process all along. If we're going to start trashing the integrity of our friends and best advocates, then we're really scraping the bottom of the barrel, in terms of advocacy, and we're in a lot of trouble.

I don't think we can ask for more integrity than that demonstrated by Dr Ellen Clayton. She's been honest and upfront about the process all along. If we're going to start trashing the integrity of our friends and best advocates, then we're really scraping the bottom of the barrel, in terms of advocacy, and we're in a lot of trouble.

I am stating my opinion about a section of what she said, which to me is very important. If she started to read the recommendation and is stating that this is why HHS hired the IOM to do the study, then read the entire recommendation.

Should I stay quiet from now on and stifle my opinions on this forum?
 

Dolphin

Senior Member
Messages
17,567
Clayton started off stating that the IOM process was started in response to. CFSAC recommendation to convene a workshop of stakeholders to work in criteria. She stopped at that. She didn't ginish the full recommendations - starting with the CCC.

The SEID criteria are similar to the CCC except for the extra non-compulsory bits at the end of the CCC:


Debilitating fatigue, etc:

CCC

SEID


Post-exertional malaise:

CCC

SEID


Sleep problems:

CCC

SEID


Cognitive problems:

CCC

SEID – need to have cognitive problems or orthostatic intolerance

Pain:

CCC

Not required in SEID


Then:
CCC

At Least One Symptom from Twoof the Following Categories:

__ a. Autonomic Manifestations: orthostatic intolerance - neurally mediated hypotension

(NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension;

light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency

and bladder dysfunction; palpitations with orwithout cardiac arrhythmias; exertional

dyspnea.

__ b. Neuroendocrine Manifestations: loss of thermostatic stability – subnormal body

temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of

feverishness and cold extremities; intolerance of extremes of heat and cold; marked

weight change - anorexia or abnormal appetite; loss of adaptability and worseningof

symptoms with stress.

__ c. Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flulike symptoms, general malaise, new sensitivities to food, medications and/or chemicals.

SEID

Orthostatic intolerance or cognitive problems


6 month requirement:

CCC

SEID
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
In the context of this meeting, I don't think that issues around the CCC were important. This meeting was for advocacy and moving forward to get us what we need, and I think its focus was appropriate.

I've just watched Morgan Fairchild speak and I'm very impressed with her too. We've got a potentially extremely influential ally there, who had a relatively light and short dose and realises how devastating the severer, chronic version of this is. And she sounds extremely well-connected in media circles.

I think this meeting was a spectacular piece of advocacy. There were (if I heard correctly) a couple of congresspeople's reps in the audience - I wish I knew who else was there.
 

GracieJ

Senior Member
Messages
772
Location
Utah
I don't think we can ask for more integrity than that demonstrated by Dr Ellen Clayton. She's been honest and upfront about the process all along. If we're going to start trashing the integrity of our friends and best advocates, then we're really scraping the bottom of the barrel, in terms of advocacy, and we're in a lot of trouble.

Double triple like.
 

mango

Senior Member
Messages
905
here are Russell Fleming's notes from Twitter https://twitter.com/Firestormmer (posted with permission):

SMCI IOM Briefing in Washington, D.C.: 25 March 2015:

Interesting. Clayton claims they were unable to review #P2P as they couldn't get hold of data.

Clayton: It was clear what this condition is - what the core symptoms are.

Clayton: 80-90% of those with this disorder are not diagnosed: they must be diagnosed: and physicians must have the tools to do it.

Clayton: We hope nobody ever has to hear the question - is it real? - again. It is real and there is no excuse to learn what it is.

Clayton: I personally recommend the presentation from @LBatemanMD [Lucinda Bateman] here: https://www.youtube.com/watch?v=X4Tnt2d-5S8

Clayton: These criteria need to be revisited. Our criteria now represent the best at this moment in time.

Clayton: We were asked to review the name. People did not like CFS. ME didn't work because it didn't describe this illness.

Clayton: Identified a number of comorbities It is crazy to think you can't have one disorder and not another. So we did not state exclusions

Clayton: Use the report. Serious complex illness. We need more. A lot of federal agencies are interested - go talk to them.

Clayton: It is time for more research. Focus on the main message from the report: we know how to diagnose it - we need to know more about it

Clayton: People getting distracted by other things are missing an amazing opportunity that they need to grasp.

Clayton: We opened a door. There is a light at the end of the tunnel. The challenge now is to go through that door.

Dr Ellen Wright Clayton is chair of the #IOM committee that produced 'Beyond ME/CFS Redefining an Illness' report: http://www.iom.edu/Reports/2015/ME-CFS.aspx
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I am stating my opinion about a section of what she said, which to me is very important.
Nielk, I know it's an important subject to you but you made a comment about the integrity of the person making the comment rather than the comment itself, and I was responding to that. Like others have said, I understand that you are frustrated with the process, but I think we have enough enemies without creating new ones simply because we have an honest difference of opinion. You don't like what she's advocating for, which is fair enough, but that's an honest difference of opinion rather than an issue of integrity.

Should I stay quiet from now on and stifle my opinions on this forum?
No. Absolutely not. We're both expressing our strongly held opinions.
 
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mango

Senior Member
Messages
905
more via Russell Fleming on Twitter https://twitter.com/Firestormmer

Carol Head @PlzSolveCFS I agree that the publication of this report is one of the most important days in the history of this illness.

Head: "Our organisation does not purport to represent all patients. No one can do that."

Head: "We do purport to use vigorous research and evidence based data to obtain additional research funding for #SEID

Head: "And to be clear, that is why we are here today. Because it is time for our Govt. to increase funding and support for this disease.

Head: "We believe the #IOM report is a turning point in the history of this disease.

Head: For all of us who are patients the #IOM report is like confirming that water is wet. We all ready knew the illness is real.

Head: But we patients - who all ready know this - are not the audience for the #IOM report.

Head: The audience is legislators, doctors, federal officials and private foundations who now see the official stamp of approval that yes indeed this is a serious, debilitating, physical disease.

Head: We believe this report is the defining moment for 2 key reasons: a disease not a syndrome - removes barriers to funding & stigma. Funding agencies now have a bright green light to move forward commensurate with the number of Americans who suffer with this illness. The seriousness of this illness can now only be refuted by those who chose to remain ignorant

Head: There are very few research dollars available to replicate even the most compelling findings in ME/CFS research to date.

Head: The other thing that has not changed with this report is that hundreds of thousands continue to suffer usually without a diagnosis.

Head: At 27 minutes read the story of 'William' who obtained top exam scores in his state as a child and 17 years later can't feed himself.

"Is our country willing to leave so many lives like mine be left like detritus on the highway, largely ignored?" William.

Head: There are hundreds of thousands of William's who suffer intensely. We must change that.

Head: The name of the disease - CFS - has kept it from being recognised for the serious, debilitating disease that it really is.

Head: With this new #IOM criteria, diagnosis can become much more straightforward.

Head: This disease has been incorrectly described as a psychological illness and still is in many quarters. This mistaken attribution of a physical illness as a psychological illness has often occurred historically with diseases that are complex and women predominate. We recognise that psychological illnesses are real and cause extraordinary pain, but it is simply not true that ME/CFS is among them. This #IOM report clearly puts that long-standing, damaging, misconception to rest.

Head: Why should ME/CFS matter to all Americans? Our Govt has estimated a $17-24 billion economic burden on the nation.

Head: What patients want most is to rise from their beds, be productive, return to work and lift the burden of their care from others.

Head: Funding per patient: $283 Lupus. $255 MS. $5 ME/CFS (based on 1 million patients).

Head: Spending on ME/CFS patients is 2% of what is spent on Lupus, 2% of what is spent on MS, and 9% of what is spent on Autism.

Head: These are all serious medical conditions and we don't disparage our Govt commitment to spending on them, but I must illustrate the *enormous* disparity in spending. It is not incremental. It is not small. It is orders of magnitude disparity in spending.

Head: Spending a lot of time talking about funding disparity Period 1987-2012 spending actually dropped 27% while total NIH funding doubled

Head: Average spend over recent years to 2014 around $5 million on ME/CFS

Head: Understanding the burden on our nation, the suffering of patients, and the new disease validation from the #IOM report, what next?

Head: So many actions can be taken to do right by patients, our family, and our nation's economy, but I ask today for only three:

Head: One - provide funding for biomedical research studies commensurate with the disease burden: roughly $250 million a year.

Head: Two - Need a strategic and tactical plan to solving disease across agencies. Consider removal within NIH from Women's Health.

Head: This disease needs an institutional home within federal govt. this is appropriate and can advocate for dollars and action.

Head: Three - as called for very clearly in #IOM report accelerate education of our nations medical professionals. The patients cannot wait.

Head: This means for example: updating CDC primer and acting on #IOM recommendations to disseminate information effectively.

Head: In conclusion... "I believe that this is the beginning of the end of this tragedy that is not worthy of the American people..."

Head: Read story of Cheryl an ME/CFS patient who later had non hodgkin lymphoma. Despite enduring chemo said she would rather the cancer.

Head: With the cancer, Cheryl found compassion, care, therapy and treatment The cancer has gone but ME/CFS continues with none of the above.

"Lymphoma might kill you, but with ME/CFS you linger in a dark hellish twilight for the rest of your days." Cheryl.

Head: This definitive #IOM report has once and for all declared that we must commit funding to research to eradicate this dreadful disease.

Head: "Now there can be no excuses. No excuses from our nations health agencies that haven't funded research... No excuses from anyone. No excuses from doctors, patients, families, co-workers who dismiss this devastating suffering of a million or more Americans."

Head: One day the scepticism about ME/CFS and the poor treatment of those who suffer from it will be as equally unimaginable as it is in MS.

Head: "With this highly credible, scholarly, #IOM report, now is the time to commit to solving ME/CFS."
 

mango

Senior Member
Messages
905
more via Russell Fleming on Twitter https://twitter.com/Firestormmer

Morgan Fairchild, activist and actor. 53 years on stage and screen. Activist for AIDS research and women's rights and environment.

Morgan Fairchild @morgfair in her first ever speaking engagement on ME/CFS. She suffered with the disease many years ago.

Morgan: "Why is Morgan Fairchild talking about this disease? Because Morgan Fairchild has had this disease!"

Morgan: "I am here to tell you it is real. And it is certainly no day at the beach."

Morgan: re: AIDS It was important to step up as it was controversial disease getting lot of bad press and people didn't want to look at it.

Morgan: Lot of interesting emerging infectious diseases in the 70s and 80s - AIDS, Mad Cow, Lyme - and Chronic Fatigue Syndrome...

Morgan: I read a lot about it and studied it and thought it was so interesting: no real way to diagnose it, no cure, nobody knew what it was

Morgan Fairchild: "I never suspected I would be diagnosed with it."

Morgan: Diagnosed via elevated Epstein Barr virus titres - 'which was one of the diagnostic markers back then'. She was diagnosed in 1989.

Morgan: "Suddenly, Chronic Fatigue Syndrome was no longer just a fascinating case study. *I* was one of the cases."

Morgan: "But I didn't feel that bad. I was functioning OK. Then the real fatigue hit later. When that hit, it hit me like a ton of bricks."

Morgan: "I just couldn't do anything. Anything was too much. For anyone in this room who hasn't had this: *everything* is overwhelming."

Morgan: "I learned to really pace myself. And to save myself for work."

Morgan: "I got through it - because I apparently had a mild case."

Morgan: "When I read some of the things and I talk to people who have gone through such horrible things - I consider myself very lucky."

Morgan: "It really set me back. But it was nothing compared to what a lot of people have gone through: some of these horrible symptoms."

Morgan: "The second thing was - I was diagnosed early. I wasn't even really tired. And I had a doctor who didn't think I was nuts."

Morgan: "It helps a lot: having someone who recognises what it is. Who told me I had it. And tried to help me find ways to deal with it."

Morgan: "Third: because I have been doing my job since I was 10 years old I could muddle through. I didn't lose my job like many others do."

Morgan: One of the things I realised was who my friends really were. Even the charities I was helping got mad at me for being ill.

Morgan: You realise: You are the only one who is going to take care of you. You are the only one who is going to stand up for you.

Morgan: You are the one who is going to have to take charge of your treatment and health, and when you are befuddled it is difficult to do.

Morgan: One of the worst things about this disease is that people think you are a flake, that you are a bum.

Morgan: My dermatologist said, when I told him I was coming here: "Well I am tired too" I don't want to hear that! People do not understand.

Morgan: Doctors should be trained in this disease. They should not be dismissive of patients.

Morgan: Brain fog: "It is like you are in some old Sherlock Holmes movie. You just can't think of things. Nothing comes. Words wont come... Thoughts wont come. Connecting ideas wont come... I couldn't think of words. Of sentences. I wasn't expressing my thoughts.

Morgan: "If I hadn't seen you for a while and I ran into you somewhere. I would know the face but I just couldn't put the name with it."

Morgan: "I was always really good. I was famous for it. Put me in a party in LA and I would know everybody's name. But suddenly - I didn't."

Morgan: "Suddenly I found I had to write down everything. And I has always been one of those people who could keep everything in my head."

Morgan: "But the day I knew I was really in trouble was the day I could not remember my own mother's phone number."

Morgan: "This was a woman I spoke to every day And it was my phone number since I had been 9 years old And suddenly I could not remember it"

Morgan Fairchild: "This disease devastates lives. I was very lucky. Carol was very lucky. We got past it."

Morgan Fairchild: "I never truly suffered so many of the devastating side-effects that so many do. I had a milder case."

Morgan: "I never missed a day of work I never had a relationship that fell apart I muddled through But many people have a much harder time."

Morgan: "There may be 2.5 million people today suffering from this disease. The major economic loss just from lost work is devastating."

Morgan: "I know so many people who have had or who have this disease. Some of whom are famous. Some whose names you will know."

Morgan: "Some whose names you wont know but are major players in my industry."

Morgan Fairchild: "No one talks about it publicly. Nobody wants to be identified with it."

Morgan Fairchild: "Real people suffer because of this illness. Real marriages break up. Real jobs are lost. Real pain and desperation exist"

Morgan Fairchild: Just as we pulled together back in the day on AIDS we are here today asking for your attention because all this has slid under the radar for way too long. This is a real disease. It causes real devastation. We need focus and funding.

Morgan: Focus - To educate the medical profession. Educate patients. Educate the public. To research for cause and cure.

Morgan: Funding - to pay for all this: "Because, honey, the science ain't free. Research ain't free. Progress ain't free."
 

Ember

Senior Member
Messages
2,115
If you (or someone) has the capacity to post some quotes here, it would be much appreciated!
Dr. Clayton: “So it is this diverse group of people who after extensive discussion and after extensive review of the literature developed this um...research definition.”

Question:
I realize that the charge of the Committee was for a clinical criteria. But considering the co-morbid conditions, can you comment on the concern among many that allowing for co-morbid conditions that have large overlapping criteria will muddy the research water rather than clarify what the pathophysiology of the disease is.
Answer:
Obviously that's a great question, and I will answer it in my personal hat. I think that obviously as you develop research cohorts, you're going to want to define what the co-morbidities are and sort of be able to control for those. I mean I think that's clearly the case. What we were mostly concerned about was that a lot of the previous diagnostic criteria, particularly...well they were all about research, not about clinical, but um were...that probably is slightly overstating it...but they...a lot of them had exclusionary criteria that said you had to exclude depression, you had to exclude this, you had to exclude that, and the fact of the matter is that that kind of approach that says that if you have to exclude all of these other disorders um meant that a tremendous number of people who actually have this disorder aren't going to be included and aren't going to be studied. So I think you have to come up with research designs that identify co-morbidities and control for them. But to say that um...that a lot of people have said previously is that this is a diagnosis of exclusion. Our view is that that's emphatically not the case. It's a diagnosis to be made, um...and that if there are co-morbidities they need to be identified and treated. Um...and that will complicate research, but you know, it complicates research all the time. Many people have more than one thing.
Question:
Part of the concern is that because obviously the patients can't do the 2-day CPET that doctors will misunderstand what PEM really is and will diagnose people who don't truly have it. We don't have objective testing for that. Can you speak to that at all?
Answer:
We tried to be very clear in terms of what we were talking about and believe that a lot of these symptoms can actually be elicited on history. To say that, you know, I think that we said this really clearly that if people engage in a particular kind of exercise that what they experience is what we heard many patients call pay-back, that they would have an extreme exacerbation of...a severe exacerbation of their symptoms such that they couldn't possibly engage in the activity again later that day, next day, week later etc., etc. So we think that there are powerful ways to elicit that on history without making people do that.
 

Ember

Senior Member
Messages
2,115
Dr. Clayton states:
If people meet the criteria for this disorder, they ought to be given the diagnosis and not another diagnosis. They need to be given this diagnosis and that there needs to be um...a change in the ICD-10 to reflect this diagnosis. I realize that this is something for the actions of others to take care of but one that's actually very important in this setting.
I'm clearly signalling when I'm talking as an independent person here. Reading this literature, it is really clear what this disorder is. Listening to patients, it is really clear what this disorder is. It jumps off the page. And so, and this was, though you know, we had a lot of discussion, it was not hard to come to consensus about what the core symptoms are because it is just...you can't miss it. So I'm just reflecting that.
We also identified a number of co-morbidities with this diagnosis. It is crazy to think that if you have one diagnosis that you can't have another one. I mean most adults...they may have diabetes and hypertension and chronic renal failure and many other disorders like that, and to say that because they have diabetes they can't have all the other things is really crazy. So we want to identify that people can have other things and for that reason we did not identify exclusionary criteria because we think it's possible to have more than one thing. If you have the core symptoms of this disorder, you have it. You can have other things too. So I just want to put that out there as well.
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
Haven't seen any news stories pop up in response to this news conference yet. Have you?
I used Google to try to find any a few hours ago and didn't find any.

.**SUBTLE HINT**
I would imagine that anybody could spread it around.
**SUBTLE HINT**


And welcome to Phoenix Rising, Farmer, whoever you are. :)
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
To the audience question of what's next, Dr. Clayton mentioned Morgan Fairchild helped arrange a meeting for her with NIAID Director Anthony Fauci.

Good step! Hope we get feedback on it from Morgan or others.

Good for her. I'm too sick to write well now, but that is something I was hoping for from her. She has a reputation for being smart.
 

catly

Senior Member
Messages
284
Location
outside of NYC
Good for her. I'm too sick to write well now, but that is something I was hoping for from her. She has a reputation for being smart.

My colleagues partner knows her, he's in the entertainment industry and says she's not only smart and articulate but is a genuine really nice person and action oriented. She's done a lot of advocacy work in other areas and we are lucky to have her as a celebrity spokesperson. I so hope she stays with us, along with Dr. Clayton who also seems smart and very sincere.