Good News From The NIH..Patient Advocate for NIH State of Knowledge Workshop

[Dolphin]

XMRV Global Action's nominations

XMRV Global Action's nominations:
http://www.facebook.com/notes/xmrv-...the-mecfs-nih-steering-committee/494605746796

 

[Cort]

Phoenix Rising's Nominations

Phoenix Rising's Nominations:

• Cort Johnson - the founder of Phoenix Rising and a CFS patient, Cort Johnson has displayed his interest and knowledge in CFS through dozens of overviews and blogs on research topics over the past seven years . As a frequent blogger and the owner of the Phoenix Rising Forums he is well placed to communicate with the ME/CFS community. He was recommended to the committee by Dr, Dharam Ablashi, co-discoverer of HHV-6 and the research director of the HHV-6 Foundation, and Dr. Nancy Klimas.
  [*]Adin Burroughs - as a Senior Systems Engineer for Scientific Research Corporation and Program Manager for Northrop Grumman from 2002-2005, Adin Burroughs has demonstrated skill at working in managing a team environment. Adin was on the Conference Committee and the Conference Planning & Review Committee (intermittently from 99-03, in charge of reviewing & selecting technical papers, speakers, and awards for outstanding papers at all SISO Conferences. He was responsible for developing a coherent plan of activities at each Workshop and soliciting papers, presentations, demonstrations, panel discussions, and other appropriate activities in support of the Conference objectives. When Adin became ill with CFS he turned his considerable intellectual capabilities towards understanding the disorder. He would bring skill in conference management plus an understanding of ME/CFS research to the NIH Steering Committee.
• Leonard Jason - Leonard Jason is a researcher with CFS who has made a profound impact on the epidemiology and understanding of chronic fatigue syndrome. As a well respected figure in the ME/CFS Community and CFSAC Committee member, he would be ideally placed to speak to both the research and patient community.
• Bob Miller - A passionate and yet sober advocate for ME/CFS Bob Miller commands the respect of the ME/CFS community. Bob’s ability to objectively weigh the evidence and be assertive without being judgmental would make him an excellent steering committee member.
• Marly Silverman - Marly Silverman has displayed both assertiveness and a deep knowledge of ME/CFS research in her efforts to create ME/CFS Treatment Centers in N. Jersey and Florida. The leader of Pandora, Marly has proved adept at creating valuable partnerships at both the physician and community level and she would be an excellent candidate to assist the Steering Committee in prioritizing research and communicating with the ME/CFS Community.
• Pat Fero - The President of the WCFSA, Pat has investigated CFS funding patterns at the NIH several times and has presented that information before the CFSAC Committee. A mother of a child diagnosed with CFS who passed away and someone with CFS she brings a strong commitment for movement in the CFS research field to the Steering Committee.
• Mary Schweitzer - Mary brings the perspective of both a researcher and a patient to the Committee. A well-loved advocate well-grounded in ME/CFS research she would be an excellent conduit to the patient community as well as a passionate spokesman for more and better ME/CFS research.

 

[Cort]

Poll

A Poll would have been fine - anybody should be able to start a poll....

He wanted the nominations by the 3rd I believe

 

[frenchtulip]

Excellent nominees!

 

[lancelot]

This shows the NIH and Dr Mangan really care about us! This is something the CDC should have done decades ago.

NIH > CDC

 

[*GG*]

A Poll would have been fine - anybody should be able to start a poll....

He wanted the nominations by the 3rd I believe

3rd of what? Jan/Feb/March?...

 

[gracenote]

3rd of what? Jan/Feb/March?...

Yesterday.

 

[Cort]

I'm afraid so...in hindsight a poll would have been perfect.....one of those in hindsight things. we probably would have had to do two polls with all the nominee's; It would have been interesting....Next time! I do think Mangan will do this again in other areas.

 

[*GG*]

Yesterday.

Oops! Oh well?!?

 

[Tia]

Cort, I'm SO happy for you! If there's someone who should be in on this, it's YOU. I hope you have the energy for this. <3

 

[justinreilly]

This shows the NIH and Dr Mangan really care about us!

I hope this is a joke! but something tells me it's not. To me this is like saying "my boyfriend really loves me because he has stopped beating me pursuant to the restraining order." (this is NOT meant to be offensive, just to reflect my feelings)

Let me guess, they'll pick someone nominated by CAA who will cover for NIH's and CDC's mistreatment of us.

That said, i am very happy that NIH is taking some real (albeit cost-free) steps in the right direction. I will stand up and applaud them when we get some meaningful funding for legitimate studies and NIAID director Fauci apologizes for his abuse of us over the last 25 years.

 

[justinreilly]

Cort: You say you are "the owner of the Phoenix Rising Forums." Non-profits don't have owners.

 

[justinreilly]

Cort,

Thanks for the great news and congratulations on being considered yourself.

I do appreciate the need to limit inclusion of patient representatives to those are well enough to handle a "significant workload."

One of the real ironies of this disease is that as the disease progresses you become more acutely aware of real risks of significant disability and pathology (I am accumulating a very impressive and growing list of documented pathology - primarily CNS damage) while at the same time losing your already compromised level of physical capacity. Over just the last 12 months, I've watched a number of long time patients fade from these boards as their health deteriorates. To be frank, it scares the hell out of me to see this in myself.

Whoever is chosen, they need to have the courage to face the uncomfortable reality that this disease will take your life and it can lead to degeneration at a frightening pace as you pass certain tipping points. They will also need the fortitude to keep driving this message home, especially to those whom we have long viewed as CFS advocates. It is my very strong opinion that a significant obstacle to progress has been the reluctance of patients, families, advocates, medical professionals and governmental agencies to face the reality that ME/CFS patients do not recover with time (symptom fluctuation is not recovery); that they suffer severe and progressive disability, and that impact on mortality is completely unappreciated as no attempt has ever even been made to record those amongst us who have died from ME/CFS.

"To measure is to know." "If you can not (will not) measure it, you can not improve it." - Lord Kelvin

Very well said, CBS!

 

[justinreilly]

Dr. Yes sed:
What we need people on this steering committee to do, among other things, are:

(1) Pressure the NIH to fund the WPI.

(2) Pressure the NIH to endorse and fund carefully controlled clinical trials of pharmaceuticals for HMRV positive CFS patients.

(3) Demand that ME/CFS be recognized as a legitimate, severely disabling PHYSICAL disease - and NOT a psychosomatic one - by all government agencies in such a manner that insurance companies are obliged to treat it as such.

(4) Pressure the NIH to allocate adequate funds for research into the HMRV-CFS association that will use the same criteria used by the WPI/NCI studies, and also to greatly increase funds for other research examining the neurological, immunological, and other biomedical components of ME/CFS.

(5) Push for the formal recognition of the Canadian Consensus Criteria as the primary tool for ME/CFS diagnosis.

(6) Push for reform of the CFS research grant review process, and its removal from the Office of Women's Health.

(7) Advocate for an NIH or DHHS endorsed information/education campaign created by ME/CFS researchers, clinicians and advocates selected by the patient community directed at medical schools and clinicians throughout the country.

(8 ) Push for the proper recognition of the potential dangers of exercise therapy for ME/CFS patients and acknowledgment that the promotion of CBT and GET as treatments for CFS by the CDC and others lacks scientific validity.

(9) Advocate for the creation by the federal government of emergency relief programs (such as federally-funded assisted living housing) for CFS patients who cannot work and have been shut out of government support due to years of failure by government and private agencies to recognize the reality and severity of their disease.

(10) Express the anger of the patient community with the way ME/CFS has been handled by the government for decades now (including by Stephen Straus), insist upon a re-visiting of the historical definition of the disease, and demand that this disease be taken as seriously as AIDS or any cancer.

(11) Push for cooperation with the WPI in the actual design of the Lipkin study, the inclusion of control samples from the WPI in that study, the end of any (un-scientific) statements by officials that this study can be in any way definitive, and perhaps the official retraction of the statement to that effect made by Anthony Fauci.

(12) Convey to the NIH the degree to which patient anger and frustration is growing with government policy toward and lack of funding of 'CFS' (and the WPI), that this anger and the degree of activism patients and their families are willing to employ cannot be gauged by the discussions on public forums, that patients and their families are increasingly aware of the politics that are preventing adequate government response, and that therefore (this part reported politely but firmly) there will be consequences of continued failure by the NIH to effectively deal with these issues: to begin with, organized public protest targeting NIH officials, media outreach, and organized lobbying of representatives.

Dr. Y hits it on the head as usual! The patient rep has to be in their face and demand the above. No more acceptance of abuse.

 

[justinreilly]

This is what I posted on P.A.N.D.O.R.A.'s facebook notice of this announcement:
Why not notify us patients of this BEFORE you turned in your list of recommendations? This is the first I heard about it, and I would have liked the chance to have input before your list was finalized. You can't cite unity ("Now is the time to unite.)" when you don't allow for input in a timely manner BEFORE the decisions are made. I'm very, very disappointed. It's really difficult to be disenfranchised by our government agencies, but it is even more disheartening when it comes from our "patient" organizations.

I agree. I think inclusion of broad patient input is important when nominating representatives.

Cort: This is why i also respectfully disagree with your request not to email Dr. Mangan. I think individual ME patients' short emails listing their own nominees would help the process and not be overly burdensome to NIH.

Patients have been silenced long enough, so requests for them to be silent on who they want to represent them doesn't sit well with me. To me this is like on 30 Rock when Tracey Morgan is doing community service by having a free showing of his film at a women's shelter and says "Attention ladies of the battered women's shelter: Please be quiet a man is speaking."

 

[Roy S]

I don't know if it's been posted here yet, but Mary Schweitzer, Pat Fero, and Ken Friedman have been named to the committee and are already at work.

I was unable to access this forum due to the add on program. Even with a different browser it's a pain in the eyes.

BTW, on mecfsforums I named three people I would like to see on this committee. They are the three that were named. Do I win something?

 

[mezombie]

Dennis Mangan's first message to Listserv members:

January 7, 2011

To the Trans-NIH ME/CFS Research Working Group Listserv (NIH_MECFS_WG-L)

Welcome to the WG listserv! Thank you for subscribing. This listserv (email distribution list) is intended to quickly and efficiently provide information to all subscribers with regard to the WG activities.

The WG is hosting a State of the Knowledge Workshop on ME/CFS, April 7-8, 2011 on the NIH campus in Bethesda MD. We have assembled a Steering Committee to help the WG plan an agenda and suggest science experts to invite to this 2 day meeting. The SC will meet on an irregular basis via conference call and email.

The Steering Committee members include: Nancy Klimas, Lenny Jason, Suzanne Vernon, Pat Fero, Mary Schweitzer, and Ken Friedman. A group of 8 NIH WG members and an AHRQ member have also volunteered to help put the meeting together. The WG will be contacting other individuals to work with the SC, so the composition of the SC will vary from week to week. The final agenda will be assembled by the WG.

This conference is considered a Workshop (rather than a Symposium) since research investigators will be asked to discuss, deliberate and then summarize the current science related to ME/CFS.

It is the intention of NIH to webcast this Workshop. This will be a open meeting.

More details regarding the Workshop will be forthcoming… thanks for your interest.

All the best, Dennis

Dennis F. Mangan, Ph.D.
Chair, Trans-NIH ME/CFS Research Working Group
Senior Research Advisor
Office of Research on Women's Health, OD
National Institutes of Health
6707 Democracy Blvd., Suite 400
Bethesda, MD 20892-5484
Tel: 301 496-9006


MZ's note: To join the Listserv and get updates delivered to your email account, follow the directions below.

Send an email from your preferred computer address to LISTSERV@LIST.NIH.GOV

The text of the message should read: SUBSCRIBE NIH_MECFS_WG-L {YOUR FIRSTNAME AND LASTNAME}

You will then receive an email and must confirm your desire to join the list. You can unsubscribe from the list at any time.

Please note that this is an information only email list service… not an Internet discussion forum.

 

[Sean]

The Steering Committee members include: Nancy Klimas, Lenny Jason, Suzanne Vernon, Pat Fero, Mary Schweitzer, and Ken Friedman.

Seems to me like a fine crew.

 

[lancelot]

Dennis Mangan's first message to Listserv members:

January 7, 2011

To the Trans-NIH ME/CFS Research Working Group Listserv (NIH_MECFS_WG-L)

Welcome to the WG listserv! Thank you for subscribing. This listserv (email distribution list) is intended to quickly and efficiently provide information to all subscribers with regard to the WG activities.

The WG is hosting a State of the Knowledge Workshop on ME/CFS, April 7-8, 2011 on the NIH campus in Bethesda MD. We have assembled a Steering Committee to help the WG plan an agenda and suggest science experts to invite to this 2 day meeting. The SC will meet on an irregular basis via conference call and email.

The Steering Committee members include: Nancy Klimas, Lenny Jason, Suzanne Vernon, Pat Fero, Mary Schweitzer, and Ken Friedman. A group of 8 NIH WG members and an AHRQ member have also volunteered to help put the meeting together. The WG will be contacting other individuals to work with the SC, so the composition of the SC will vary from week to week. The final agenda will be assembled by the WG.

This conference is considered a Workshop (rather than a Symposium) since research investigators will be asked to discuss, deliberate and then summarize the current science related to ME/CFS.

It is the intention of NIH to webcast this Workshop. This will be a open meeting.

More details regarding the Workshop will be forthcoming… thanks for your interest.

All the best, Dennis

Dennis F. Mangan, Ph.D.
Chair, Trans-NIH ME/CFS Research Working Group
Senior Research Advisor
Office of Research on Women's Health, OD
National Institutes of Health
6707 Democracy Blvd., Suite 400
Bethesda, MD 20892-5484
Tel: 301 496-9006


MZ's note: To join the Listserv and get updates delivered to your email account, follow the directions below.

Send an email from your preferred computer address to LISTSERV@LIST.NIH.GOV

The text of the message should read: SUBSCRIBE NIH_MECFS_WG-L {YOUR FIRSTNAME AND LASTNAME}

You will then receive an email and must confirm your desire to join the list. You can unsubscribe from the list at any time.

Please note that this is an information only email list service… not an Internet discussion forum.

More good stuff coming from Dr Mangan and the NIH. They are taking ME/CFS seriously. no joke!

 

[rwinsmom528]

face the reality that ME/CFS patients do not recover with time (symptom fluctuation is not recovery); that they suffer severe and progressive disability, and that impact on mortality is completely unappreciated as no attempt has ever even been made to record those amongst us who have died from ME/CFS.

Whoever is nominated, this fact needs to be emphasized as loudly as possible. We need doctors and others to know that by pushing us to do things causes permanant damage. We need doctors and others to remind us to take it easy and not stress oursevles instead of pushing us to our deaths.

We also need to have the mortality of this disease studied. Diseases recognized as fatal get much more attention than others. Ours is fatal, but there are not many out there who want to admit it.