#125~ ME/cfs: Emily's Last words ~ RIP

Well folks, That "Invisible Illness" ME/cfs has just claimed another loving soul.
Another that fought long and hard and did her share of Advocacy..
Please share this with as many as you can that think this illness is STILL "All In Our Heads."

RIP~ dear "Emily Rose Collingridge" 1981-2012

Maybe something will make them finally realize that this could be their friend or daughter or son or grandson..... NO ONE is exempt.

May 12th, our 20th Anniversary of Advocacy is coming soon....
Please speak to your local Support Groups and make plans NOW.
We can NOT sit still any longer or again..

Please ASK your friends to HELP if they care for you "at all."
Other illnesses have "Walks" done by friends and families...
WHY Won't OUR's do the same ???

ASK THEM WHY ???
After they read this.... Thanks.

******** 
Emily's mother Jane has asked for these last words from Emily to be reposted. They were written over many weeks – while her daughter still had the strength in her body to do so. Please repost as this is Emily's final wish.

Jane Collingridge: "It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it"

Emily’s Appeal:

“My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old.
In April 2011 I turned 30.           I still have ME.
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease. My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion.

If you met me you may well think I was about to die now – it’s like that every single day. After all these years I still struggle to understand how it’s possible to feel so ill so relentlessly. My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor’s visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I’ll go mad with the suffering. Of course it can also be as bad as this for no particular reason – and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music – the list is long.

ME has made my body an agonising prison. My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I’m on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable – this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration. Many days I feel utter despair. But, unlike some sufferers, over the long years in which I’ve had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going. My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong.

As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it.

This is something that must change. And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope.” By Emily Collingridge 2010-2011

Thank YOU for taking the time to reading Emily's "Last Wish."

May you HEAR some of her heart thru her words and know that
there are over 17 million people with this "Invisible Disease" that has
now been ignored for 3 generations, and our Memorial list is Way TOO LONG.....

NOT ALL DISEASES "ARE VISIBLE," but that doesn't mean they are not REAL.

http://www.severeme.info/about-emily.html
http://www.blogistan.co.uk/blog/mt.php/2012/03/20/emily-rose-collingridge-1981-2012

ShareThis

#123~ Email- FaceTheNation, ~ ASAP Please

How would YOU like being referred to as "a descriptive phrase in a political discussion that has absolutley NOTHING to do with your 
illness ?

Please think about it... You or your child have now been reduced to an adjectivce in the gramatical lexicon of this society... 
Are you Happy to let this continue ? Or will you Help and Be Part of the Solution that Encourages the "Press + Media" to  "Actully THINK" before they spew out words and phrases that are not accurate and actually do harm to Millions ?


Time for Phone Calls, and emails folks !! PLEASE THX 

♥from Robert Miller~ another ME/cfs long time patient...

" I have been speaking with Rob at programing of Face the Nation, who has assured me that he would pass on to John Dickerson who made the comment, that ME/CFS patients are offended. Rob did give an apology over the phone and we agreed that Mr. Dickerson had no idea of what he was saying and his ignorance of ME/CFS would be the reason why. I also filed a complaint with CBS corporate headquarters. I should get some reply Monday.

I encourage all to write emails and send them at least once daily, until we get a proper response. Also call the number listed 1-202-457-4481 and if you get a live person, just tell them you are a chronic fatigue syndrome patient and you were offended by John Dickerson's remarks on Dec. 4, 2011 on the "Face the Nation program". If you get a machine please leave the same message. Send emails to
"John Dickerson"
and it will be forwarded to Mr. Dickerson. "

***Offending Paragraph from the Transcript where 

"WE become a descriptive phrase" in a political discussion !
on Page 4 ~  

 

 

 

 

 

 

"Face the Nation" transcript: December 4, 2011 - CBS News

www.cbsnews.com

http://www.cbsnews.com/8301-3460_162-57336330/face-the-nation-transcript-december-4-2011/?pageNum=4&tag=contentMain%3BcontentBody

"Face the Nation" transcript: December 4, 2011

JOHN DICKERSON (CBS News Political Director): Well, it's like there's a chronic fatigue syndrome about-- about Romney in the Republican Party. I mean, the-- the voters just do not want to move to him. And what's extraordinary about the Gingrich rise is both that he's come back to-- to live here. But it says something about Romney's weakness. If Gingrich is the nominee, and the fact that he's ahead, he is going against two fundamental tendencies of Republican politics in recent history that we had the Tea Party which doesn't like establishment politicians. That's what Gingrich is. Social conservatives, another major force in Republican politics used to say the moral character of the candidates was fundamental to their being President. Well, we know Gingrich has a past. If he is the nominee, he runs in the face of those two major trends of Republican politics.

 

PLEASE Stay Polite and let them know from your heart how this made you feel...
If you send an email, then send them some links for resource...
Maybe some videos or other articles that could ENCOURAGE gthen to also

write some artivles or delve fruther into this illness so we can get more GOOD Coverage.

Possibles are the ME/CFS Alert Lewellyn King videos with either Bob or L. Jason.
Maybe the Davod Tuller article on the History of abuse by the CDC of this illness.

Maybe the New "2011 ICCriteria for ME" to understand HOW many Dr's around the world ARE also changing thre name/definition and attitude.

If you need exact references, please leave a comment and let me know which ones you are looking for and I will try to provide you with the appropriate URL address....in my reply to you.

Please do it THIS weekend or this Week for MAXIMUM EFFECT before the article gets too old and the Holidays are here and take over the News coverage, OK !

Thank YOU for any Help that you can procvide...
every email and phone call DOES Help Our Cause...
Numbers DO Matter in thids age where TV stations are Fighting for their Existence

Fighting up against the internet and even the Cable stations..

If WE do NOT Speak UP for Ourselves than WHO Will ??

NOW is the Time...
Do NOT Let Our Coverage DISAPPEAR...

Stay Active and Enclourage your firneds to do the same..

If some call and some write.. we CAN Make a Difference~

Bless you all that choose to a Help and speak UP for yourself 

and those that are unable. Please remember The Children

and those unable to speak up...

 

We may not have a lot of money to give to Charities at this time of year

or at any time actually.. but we can give a few minutes of our time

now that we have been givem the blessing of this internet

or making a quick phone call..

 

End the year by Feeling GOOD about Yourself and what 

you have been able to do to Help others around the world..

*******************

Also, at the same time, please do NOT forget out op-going Help

for those in the UK tpo Help them Build 

a BioMedical ME Research/Hospital Facility....

 

The U.K. Campaign is called "Let's Do it for ME"
Here's their blog with many links and info for you to 

familiarize yourself with them and get to know

how you cna help no matter where you are...

This after all IS a World Wide Illness of Millions...

and sadly the patients have ben theones that have been doing MOST

of the PR to help get the Medical World and the Pubic World

and the World's Economies "Take NOTICE."

Let's Do It For ME

http://letsdoitforme.blogspot.com/p/about-us.html

ShareThis

#122~ Restoring ME/CFS Research, Education, and Patient Care to New Jersey

Restoring ME/CFS Research, Education, and Patient Care to New Jersey
CFSAC Public Testimony, Nov. 8th, 2011
By Kenneth J .Friedman, Ph.D.

I wish to inform the Chronic Fatigue Syndrome Advisory Committee and other stakeholders in the ME/CFS Community that there is a window of opportunity to potentially restore ME/CFS research, education, and other, related, scholarly activities to one of this country’s most populated states: New Jersey. The Governor of New Jersey has formed a UMDNJ Advisory Committee the purpose of which is to advise him as to the future of the University of Medicine and Dentistry of New Jersey (UMDNJ). The options range from doing nothing and keeping UMDNJ, the largest, free-standing, academic healthcare University in the United States, as is, to completely dismantling the University and dividing its components and assets amongst other New Jersey academic institutions. The Committee is now willing to accept comments from the public.

The impetus for the establishment of the UMDNJ Advisory Committee may reside in the corroded image of UMDNJ, forever charred into this nation’s psyche, by its purposeful, $35 million dollar, double-billing of Medicare. However, of equal or perhaps greater concern to the ME/CFS Community is the February, 2010 decision of the University to ban ME/CFS research, education and related scholarly activities from the University using the pretext that such activity is not “professional” but rather “personal.” According to that policy, any and all scholarly activity related to ME/CFS may be performed performed by faculty only outside of regular, normal business hours. The policy further forbids use of the University’s portal to the internet for any ME/CFS-related research, and denies use of the University’s email client server for correspondence with anyone about anything related to ME/CFS.

The University’s policy to ban ME/CFS scholarly activity came after two, related New Jersey Medical School attempts to minimize the professional nature of ME/CFS related activities: (1) the New Jersey Medical School refused to consider the Consensus Manual for the Primary Care and Treatment of Chronic Fatigue Syndrome a peer reviewed publication despite its having been reviewed and approved for publication by the Senior Editor of Harvard University Medical Press, Dr. Anthony Kamoroff, and its translation into two foreign languages, and (2) the New Jersey Medical School maintains that five years of service on the CFSAC did not constitute professional, academic service at the national level since individuals without scientific background, such as Magic Johnson has served on Advisory Committees.

UMDNJ controls all three of the state’s medical schools, as well as the state’s only dental school, school of nursing, school of health related professions, school of public health, and graduate school of biomedical sciences. This ban of ME/CFS scholarly activity in the University is, therefore, impacts patient care in the greater New York metropolitan areas, as well as the advancement of ME/CFS research, and healthcare provider education and training throughout the United States. Equally important, however, is the precedent that this establishes for other medical schools and schools training healthcare professionals throughout the United States to establish similar policies.

UMDNJ’s actions are clearly an attack on academic freedom – the right of college and university faculty to pursue their academic interest – and should be opposed on that basis if for no other reason. If UMDNJ wishes to continue as a university, then it must behave as such and afford its faculty the rights afforded to University faculty elsewhere. For UMDNJ to continue as a healthcare university, it needs to comply with the principle of academic freedom.

Of particular concern to the ME/CFS community, is the failure of UMDNJ to honor the CDC’s ME/CFS policy as articulated by its Director in 2006, Dr. Julie Gerberding, who stated, “We are committed to improving the awareness that this [ME/CFS] is a real illness and that people need real medical care and they deserve the best possible help that we can provide.” Why does the Department of Health and Human Services’ continue to provide funding to UMDNJ when UMDNJ maintains that faculty who engage in scholarly activity related to ME/CFS are engaging in non-professional activity? The Department of Health and Human Services continues to give money to a University which knowingly and deliberately obstructs one of its agency’s mandates. Why?

Governor Chris Christie’s UMDNJ Advisory Committee has received testimony from UMDNJ employees expressing the belief that UMDNJ be retained in its current configuration. Current employees may have a vested interest in retaining UMDNJ in its current corpus. Stakeholders of the ME/CFS Community may have a different opinion, since dismantling UMDNJ would remove the ban and restore ME/CFS activities to New Jersey’s healthcare centers. The CFSAC may wish to make a recommendation to the U.S. Secretary of Health based upon the facts conveyed herein and, perhaps, after its own, further investigation.

According to what was published by UMDNJ, comments may be submitted via email to:

The window of opportunity for submitting comments is not specified.
I would not wait long.
Thank-you for your attention.
*************************
Thanks for your Testimony and for supplying the typed copy for the committee.
Send those emails.. Here's a Place WAITING to be Used Properly...
and if used for ME/CFS the Revenge would be OH SO Sweet !!

ShareThis

#121~ CFSAC this week-Please Read~ THx♥

Please Share and Post Widely


CFSAC Demonstration NIH & CDC
ME/CFS Patients Advocate for Patients

Time:   
Tuesday at 8:00am - Wednesday at 5:00pm
Location:   
Holiday Inn Hotel Washington-Capitol
550 C Street, S.W.
Washington, DC
 ___________________________________________________________
ME/CFS Patients Advocate for Patients :
Email me at bobmiller42@msn.com if you will attend CFSAC for more details
Please SEND an email and let us KNOW you WILL attend either from HOME or in Person.
__________________________________________________________
WASHINGTON, D.C. – On Nov. 8, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) will protest against 25 years of neglect by the National Institutes of Health and the U.S. Centers for Disease Control. The protest will greet members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) just before they begin their bi-annual meeting at the Holiday Inn Capitol, Columbia Room, 550 C St. S.W., Washington D.C.
___________________________________________________________
Patients attending CFSAC Protest will be provided with Shirts and Props:
We will also have access to Wheel-chairs for those needing assistance
___________________________________________________________
Patients unable to attend CFSAC can be with us via the Web:
Make your own signs, shirts and Banners then post pictures on your own Facebook Page and on the Facebook Page for this Event.
We will update you with video from CFSAC as possible, Watch for updates on the websites that will be posting video & information:
____________________________________________________________
Contact via email the representatives from DHHS listed below starting after 5 pm on Nov.7th Eastern and by Nov. 8th. at 8 am Eastern, so we will have their undivided attention AT the meeting.
____________________________________________________________
TO:
nancy.lee@hhs.gov,
BCC:
howard.koh@hhs.gov, and at ash@hhs.gov,
wanda.jones@hhs.gov,
kathleen.sebelius@hhs.gov,
francis.collins@nih.gov,
afauci@niaid.nih.gov,
BCC: to me at hebs1reel@yahoo.com to track the numbers
Thank You !!

Let them KNOW you resent their descriminating against OUR RIGHTS to be able to access the meeting LIVE since SO Mamny of us have Sensory overlaod and Must turn the Audio DOWN and READ the closed captioning~
Have then NOT been listening to the Testimonies for the last many years ???
WHO are the DEAF ones here ?

1) Let them KNOW we will NOT be Silent for another 25 years and it's TIME to PUT these patients First and 2) get some ACTUAL Correct info out to the MDs that treat us out in the REAL World and 3) to start addressing the issue of Disability for those that have Fallen thru the cracks because of their 25years of lack of addressing this disease, 4) and time for the NIH 
to Fund some CLINICAL TRIALS NOW~
5) Treat those w/o Disability that have been sick for 20+ years and STOP this Genocide that is in it's 3rd Generation.. 6) and tell the FDA to leave our Supplements alone !!! 7) Adopt the 2011 CCCriteria for M.E. and 8) FIX that CDC website that is an International Embarassment and source of Abuse for aboit 15 million people.
__________________________________________________________
Those that are able to attend will do our part. We know you will Stand with us, YES ?
____________________________________________________________
Together we will move science forward,
United We Stand, Divided We Stay home for another 25 years.
So get your signs ready in Person AND ONLINE ♥ Thank you All
************************************
Agenda – CFSAC Fall 2011 Meeting
November 8, 2011

9:00 am    (Eastern Standard Time, USA)
Call to Order
Opening Remarks

Roll Call, Housekeeping
Christopher R. Snell
Chair, CFSAC

Nancy C. Lee, M.D.
Designated Federal Officer
(Wanda's replacement)

9:10 am    International Classification of Diseases-Clinical Modification (ICD-CM)
                by Donna Pickett, RHIA, MPH
National Center for Health Statistics
10:00 am    Public Comment    Public
11:15 am    Break   
11:30 am     Welcome Statement from the  Assistant Secretary for Health   
                Howard K. Koh, M.D., Ph.D
12:00 pm     Agency Updates: AHRQ, CMS, FDA, HRSA    Ex Officio Members
1:00 pm    Subcommittee Lunch = Subcommittee Members
2:00 pm    Public Comment by Public
2:45 pm    Break   
3:00 pm      Future Interdisciplinary Research for CFS Utilizing a Variety of Scientific
Disciplines: lead by Gailen Marshall, M.D., Ph.D. and Committee Discussion
4:00 pm      Committee Discussion
Past CFSAC Recommendations    by Committee Members
5:00 pm    Adjourn     
*************************************
Agenda -- CFSAC Fall 2011 Meeting
November 9, 2011
9:00 am    (Eastern Standard Time, USA)

Call to Order
Opening Remarks

Roll Call, Housekeeping
Christopher R. Snell
Chair, CFSAC

Nancy C. Lee, M.D.
Designated Federal Officer
(Wanda's replacement)

9:15 am    HHS Office on Disability    Rosaly Correa-de-Araujo, M.D, M.Sc.,Ph.D
Deputy Director, HHS Office on Disability
10:00 am    Centers for Disease Control and Prevention Webpage   
Eileen Holderman, Nancy G. Klimas, M.D., and Ermias Belay, M.D.
10:30 am    Break   
10:45 am    Agency Updates: CDC, SSA, NIH-Ex Officio Members
11:45 am    Minimal Elements for Papers-Leonard A. Jason, Ph.D.
12:15 pm    Subcommittee Lunch = Subcommittee Members
1:15 pm    Public Comment-Public
2:15 pm    Break   
2:30 pm    Committee Discussion
Finalize Recommendations by Committee Members
4:30 pm    Adjourn   

****************************************************************
INFO from the CFSAC below, proving they are NOT accommodating patients with "sensory overload" for this meeting that MUST "Read the captions" let alone those with "Hearing Disabilities." THIS is just ONE Reason we are Protesting.... NO LIVE VIDEO this time !!
****************************

Audio Call-In Information
PLEASE Call in and SHOW them the NEED that we ARE Listening.. and we NEED the LIVE video!

The Meeting of the Chronic Fatigue Advisory Committee will be available via AUDIO Lines. The following call-in information will provide access to the meeting via audio lines:

Please dial the participant dial-in number:

Participant Dial-In Number: 1-(866)-395-4129

Please use the following passcodes for each day:
Passcodes:
Tuesday, November 8: 24756185
Wednesday, November 9: 24759937

Please note, each caller can press *0 at any time during the call to contact the operator for support.

There will be an operator on the line to welcome you and each caller will be asked their name and email address (this is NOT a requirement). You will be placed into the conference.

During the lunch hour, callers may hold the line or choose to call back to access the conference.

ShareThis

#119~ Urgent: November CFSAC concerns:

Occupy the CFSAC via EMAILs ASAP ♥

Subject: Urgent November CFSAC concerns:

a) It has come to our attention and was confirmed that the CFSAC arrangements next month are concerning for a number of reasons, some of which seem to indicate that the government is once again marginalizing people with ME/CFS:

b) Thousands of us have UNITED over the past 2-3 years via watching the CFSAC meetings LIVE online and Sharing the info. Now they are Stating this
"LIVE-Streaming will NOT Occur at the November meeting"...

Please ASK as many of your friends as possible to Join Us and send an Email ASAP so that there will be
"NOT ONE WORD ABOUT US WITHOUT US" !!

This is violating their "accommodation for rehabilitation for people with Disabilities" and their past agreement to LIVE STREAM the Video AND the Audio. Many must listen, many can only watch IN SILENCE and read the text captions.
BOTH ARE VITAL !

This is an URGENT Vital Plea regarding Our knowing what OUR Federally Designated Committee and the attendees are saying about us LIVE !
Please Help PROTECT "OUR RIGHTS"~
"NOT ONE MORE WORD ABOUT US w/o US" !!

They ARE moving it to a Larger Room in another building so more than 50+ ppl can be accommodated, which IS a good thing.

If you have ME/CFS/FM/HGRV  or any NID, Please share this info with EVERYONE YOU KNOW and ask them to Help by sending an email, with the link to this blog.
Here is the Official Notice for the Next CFSAC meeting and they are violating our 508 Rehabilitaion Act  agreement to "stream it LIVE" so we can all SEE + Hear it LIVE !!

CFSAC Bylaws State:

"All materials posted on the CFSAC website shall be 508 Rehabilitation Act compliant to provide equal access to people with disabilities.

To the extent possible, meetings are broadcast over the Internet as real-time streaming video. Meetings "also" will be recorded and archived on the CFSAC website for viewers to watch at their convenience."

In MY book "also" means IN addition to....

The meeting will NOT be broadcasted live on-line like it has the last 2 years. Again, it is not clear why it will not be. Instead it sounds like audio will be available only with possibly video available later on. Certainly, this cannot be for lack of viewship -- Wanda Jones announced that several hundred people watched it live -- nearing 1000 at the May meeting. This is a huge increase as before the videocasts, had less than 100 people usually. CFSAC meetings are near impossible for the majority of ME/CFS patients to attend due to health or financial reasons. It should be noted that many, many NIH and DHHS meetings are videocasted live and probably with a lower number of people watching. The number of testimonies has also gone up over time and we believe this is partly due to patients better understanding what CFSAC is.



"NOT ONE MORE WORD ABOUT US w/o US" !!

© 2011 - John Herd

c)
People who have not presented at the meeting before will be given priority to present. Although this is done prima facie for fairness, it might also mean that people who are knowledgeable/ experienced about ME/CFS and the gov't's history of dealing with it might be shut out from testifying. Does this apply to reps from groups also ?

d)
Please FLOOD her/their inbox with emails
immediately using the layout below to:
Dr. Nancy Lee is the new designated
federal official and her e-mail is:

In the "TO" section:
"Dr. Nancy Lee"
"Dr. Nancy Lee"
and copy that name/address EXACTLY, Promise ?

Then in the "BCC" section: add

Howard Koh ,
Howard Koh ,
Kathleen Sebelius ,
Fancis Collins ,
Dennis Mangan ,
Wanda Jones ,


The last one in the BCC: section~ the one to bodieangels, so we can tabulate how many were actually sent, OK ? ♥ If you want, send a "BCC" to yourself so you can see what it looked like.

Be SURE to use the "quotes" then a Space and the to make the address Correct ♥ with a comma in between each one, OK ?

"NOT ONE MORE WORD ABOUT US w/o US" !!

and for:
"President Obama"

http://www.whitehouse.gov/contact     
(it's a form to prevent spamming)
 
I suggest you create your Letter in a plain text program FIRST ( NOT "Word" ) so you can simply Copy + Paste it into the email. It helps me when I do that.♥

--> Let's SEE if we can get 1,000 emails sent 
                                BY the End of this week, OK ?

d)
Please click "attending" if you Promise to just even send one short email stating some of what we've written here requesting that they STAY Consistent and ask for "NOT ONE WORD ABOUT US WITHOUT US" and that they Accommodate the needs of the Disabled as in the past. Also, Please ASK as many friends as you can to just the same simple email. ♥

♥Hugs♥ and Thanks from Around the World !!
        ---->   WE CAN DO THIS !!!  <-----




e)
PS: For those submitting written Public Comment or doing the same LIVE in Person~

Finally, in terms of preparation for CFSAC, the CDC website is currently under review. I suggest that we encourage people to mention what negative impact the CDC website has had on their lives (e.g. how their docs took the information, how it might have skewed media perception of CFS, etc.) and how the website could be modified to make the situation better and educate GPs/MDs "properly" by providing Quality videos for them to watch for their CEUs to maintain their licenses.

Until they get THAT in line with the
2011 CCCriteria for ME, we will NEVER make any progress..IMHO.

Let us "Occupy the CFSAC via Email" this week, OK ? 
Luv ya all for helping OURselves and staying ProActive ♥

If you are having any problems creating a ltter there are a few samples in the comment section of the FB Event that you may use.
http://www.facebook.com/event.php?eid=233487310041319
PLEASE be sure to send one to Pres. Obama also..  SEE the notice BELOW !!

© 2011 ~ John Herd

 

UPDATE: 

Dr. Lee clearly received a lot of complaints. The email many of us received is now on the CFSAC website.

I say we need to continue to write letters and apply pressure to let her know this "accommodation" is not acceptable.

KEEP SENDING THOSE LETTERS AND REPLY TO THEIR CANNED REPLIES ALSO, OK?

http://www.hhs.gov/advcomcfs/notices/n101811.html
FYI> RE: Section 508 ~

Office on Disability

Section 508 Update

Acknowledgement: Office of Equal Employment and Diversity Management, FDA

The goal of the Section 508 law (part of the Rehabilitation Act of 1973, amended in 1998) is to reduce electronic and information technology barriers experienced by people with disabilities. Under this law, the Federal Government is required to purchase and deploy new IT and other electronic products that are accessible or compatible with assistive technology used by people with disabilities.

In a memo to all HHS employees dated August 30, 2001, Secretary Thompson called this law an exciting opportunity to help close the digital divide for individuals with disabilities in America.

"Section 508 affects every employee within the Department, not just those who work with technology or procurement. Every HHS employee has a collective responsibility for compliance with Section 508's mandate to make our information accessible to individuals with disabilities. This means that HHS employees must take proactive actions to ensure that all electronic and information technology developed, procured, maintained, or used, and all new or revised information made available on the Internet and Intranet meet the new accessibility standards."

The accessibility standards provide technology access to members of the public and Federal employees who have disabilities. Lawsuits may be filed in federal court or administrative complaints may be filed with Agencies or the Department of Justice for non-compliance with the law. __  __  __

Successful implementation of Section 508 requires the support of every Federal employee who may be responsible for incorporating Section 508 into the design or development of IT systems requirements, or the development of web pages and their content. Any time there is a purchase request of any electronic or information technology, or at any stage in the procurement or IT development process, Section 508 accessibility requirements must be implemented.

For more information on Section 508, check out www.section508.gov, contact your agency Section 508 Official, or call the HHS Office on Disability.
******************************************************
THE WHITE HOUSE
Office of the Vice President
________________________
FOR IMMEDIATE RELEASE
February 12, 2009

VICE PRESIDENT JOE BIDEN ANNOUNCES KAREEM DALE AS SPECIAL ASSISTANT TO THE PRESIDENT FOR DISABILITY POLICY

First Time a President has had a Special Assistant Focused Exclusively on Disability Policy

BOISE, ID – Vice President Joe Biden today announced Kareem Dale as Special Assistant to the President for Disability Policy. The Vice President, who was leading a Presidential Delegation at the 2009 Special Olympics World Winter Games in Boise, Idaho, made the announcement during a stop at the Special Olympics’ Healthy Athletes Event, a worldwide program in which athletes receive a variety of health screenings and services.

"The commitment that the President and I have to Special Olympics and people with disabilities is deep and abiding. And we are backing up those words with real action at the White House," said Vice President Biden.  "This is our first step to ensure that we have a strong advocate for people with disabilities at the highest levels of our Administration."

Dale, who is partially blind, will have direct access to the President in this role and he will coordinate the Administration’s efforts to see that people with disabilities are on a level playing field with all Americans.

 >>>>Think DALE would want to HEAR the CFSAC meeting LIVE ?? <<<<

**************************

 ORIGINAL NOTICE:

http://www.federalregister.gov/articles/2011/10/05/2011-25739/meeting-of-the-chronic-fatigue-syndrome-advisory-committee


ShareThis

#114~ CFSAC Testimony- Mary M. Schweitzer, Ph.D.

This will be the first of a few "Special Guest posts" I will make, with the permission of the authors, of their CFSAC Testimony for this May 2011 meeting. I am doing this in the hopes that many of you that are not even able to view the meeting on the web and don't belong to Facebook or a forum will be able to read these and know what we are telling the CFSAC. I am attempting to include a cross-section of the different testimonies so you will get to see the big picture of this illness and the dialogue that will be taking place May 10+11th, 2011, in Bethesda, Maryland, USA.





Testimony
Mary M. Schweitzer, Ph.D.

First, I want to thank Wanda Jones and this committee for giving us a chance to speak, and in particular, for livestreaming this meeting so that patients who cannot travel (which would be most of the ones I know) and patients who are housebound (which would encompass too many of those I know) can view the meeting from their homes, both in the United States and abroad.

I also want to thank Dennis Mangan, the NIH committee that I was privileged to be a part of, and all the participants, for the outstanding State of the Knowledge workshop on such short notice.

I want to focus on the Centers for Disease Control and Prevention (CDC) today. CDC has been studying this disease for over a quarter of a century, and haven’t gotten very far. It is time that they caught up with 2011.
First I want to make clear that when I refer to CFS, I mean the Fukuda definition (1994), and when I refer to ME/CFS, I mean the Canadian definition (2003). When I refer to M.E., I use the Ramsay and World Health Organization definitions.

1. CDC’s Portrayal of the Disease
Suppose you broke your leg really badly. You knew it, your family knew it, your friends who were with you knew it. Somebody called emergency, and the ER techs came out. They had already been told by your family that you had a broken leg, but they said they had to find out for themselves. They came up to you and said, “Why do you think you have a broken leg?” Startled by the question, you said, “because it is obviously broken!” (Selfreported, one says to the other.) How about you stand up and we can see what’s going on with that leg. “NO!” you responded! “That’s going to hurt!” (Catastrophizer, they murmur among themselves. People who catastrophize about pain are more likely to feel pain.) Then they write a prescription for Prozac, say “Take this until you feel more comfortable about the prospect of standing up,” and they leave.

Now, of course that was a silly story. But it is exactly how I was treated by the first specialist I saw for this disease. “Self-reported” is an insurance term that is used by British psychiatric “experts” on CFS; and there is a published paper out there about CFS and fibromyalgia that uses the correlation between these diseases and fear of pain to conclude that people who fear pain are “catastrophizers,” and “catastrophizing” causes pain. There is a large body of psychiatric research on this disease that is just plain silly.

So don’t be surprised if patients are a bit worried about what researchers say about them, or what the government does about them. If you had a badly broken leg and nobody in the medical profession would believe you, you’d be a little cranky too. Indeed, when scientists injected lab monkeys with HHV-6, Variant A, the poor things hid in the corners of their cages looking supremely miserable, and one would drag his left arm and leg when they made him walk. Poor baby. Been there. At any rate, the scientists working with the monkeys said that they got a little cranky toward the end. No kidding.

Ever since CFS was abandoned by NIH, CDC has been the central agent of promoting views that are diametrically opposed to our experiences. For 25 years they have insisted this disease as caused by some sort of “stress,” – at first the stress of yuppie women “trying to have it all.” Today they claim the stress is caused by having been abused as children – but they’re still saying the same story. It’s just caused by an inability to handle stress.

Something else I have faced when coming here or when at a conference on my disease, is the phrase “Oh, I don’t believe that.” I recently wanted to talk with a well-respected virologist about HHV-6, Variant A, which I is a vicious disease, and which I have in both my blood serum and spinal fluid unless I am on Ampligen. The researcher stopped me as soon as the words came out of my mouth, “I have HHV-6, Variant A.” “Oh, no you don’t,” he said, cheerfully. “There’s probably just some artifact in your blood that makes it look as if you have HHV-6, Variant A.” That’s pretty much the same thing Stephen Straus said to me when I testified here twelve years ago about HHV-6, Variant A. And my response is the same now as it was then: I was part of a study of a handful of CFS patients conducted by Dharam Ablashi, the co-discoverer of HHV-6 and its two variants, while looking at samples from AIDS patients at NCI. Ablashi saw the virus in my lymphocytes. It was no artifact. But …”Oh, I just don’t believe that” is something I often hear. Hardly a scientific response, don’t you think?

In the meantime, we remain sick. So let me offer my first suggestion: if the approach hasn’t helped anybody with the disease in a quarter of a century, time to change the approach.

2. When is CDC going to begin to identify subgroups using biomarkers?
The Fukuda article from 1994 that gave us the most commonly used research definition also strongly urged CDC to begin identifying subgroups using objective biomarkers. That was 17 years ago. But if you look on CDC’s website, when they discuss biomarkers or microbes associated with The Disease, they always put them in the context of “The Cause” of CFS. No, that’s not the point, guys. A biomarker does not have to be “The Cause” to be useful. It just has to correlate. And when we are trying to identify subgroups, it doesn’t have to correlate with everybody who has ever had a diagnosis of CFS.

I belong to an identifiable subgroup. When in relapse off Ampligen, I have, among other things, immune biomarkers and activated opportunistic viruses. There is a
subgroup of patients who have precisely what I have, though I have more viruses than many, and some have viruses I don’t.

My immune biomarkers would be the 37kDA Rnase-L defect, which always shows up when I am off Ampligen and disappears when I go back on it, and natural killer cell dysfunction. During my most recent relapse, from September 2008 to the summer of 2010 (after having been on Ampligen for several months), I had a natural killer cell function of 2%. I also have an abnormal cytokine profile.
During relapse, I had active viruses in both my blood serum and my spinal fluid. I hold a flush in herpes viruses – Human herpesviruses 4-7. My relapses usually start with Epstein-Barr, which comes and goes while I am really sick. I test positive for active HHV6, Variant A, cytomegalovirus, and HHV-7. I also have Coxsackie B. I have friends who have parvo or an adenovirus, and I have friends who do not have HHV-6 or cytomegalovirus. As for the immune biomarkers, there’s a pretty strong correlation between those who were in cluster outbreaks and natural killer cell dysfunction.

I think we’re a subgroup, and I’d be very grateful if that could be recognized. The researchers who work with HHV-6 have been asking for years that Variant A and Variant B be recognized as different viruses, with one renamed HHV-9. CDC has turned a deaf ear to their research and requests. Intriguingly, Variant A is found in AIDS, CFS, and in the lesions of MS patients. Variant B, which causes roseola in children, is the virus that reactivates when patients are put on immunosuppressant drugs. While Variant B is endemic (it is the childhood disease roseola), in 90 percent of the adult population, Variant A is found in only 7 percent of the population. These are different diseases, but we need CDC to recognize that.
Finally, outside scientists at the NIH State of the Knowledge workshop strongly urged researchers to adopt the VO2 MAX score as an objective marker of the disease. Mine were significantly abnormal during the relapse – 14.5 – and even now, at 16, not a whole lot better. I have a lot of recuperating to do.

3. NCHS, within CDC, is overseeing the development of ICD-10-CM. We need to keep CFS in the same code as in ICD-10 – under neurology, at G93.3. That’s where it is in WHO’s index to ICD-10 – adopted by over one hundred nations. It’s also under G93.3 in the tabular versions of the clinical modifications produced by Canada, Germany, and Australia. It should not be placed in R53.82, under “vague signs and symptoms.” We would be the only nation to have CFS in R53.82. Why?

4. CDC needs to stop using British psychiatrists as consultants and guides to the definition and treatment of CFS. I am speaking specifically of Simon Wessely, Michael Sharpe, Peter White, and nurse Trudie Chalder. The latter is a specialist in “factitious illness” and “factitious illness by proxy.” Is THAT what CDC thinks of us and our disease?

It should be noted from the outset that the British psychiatrists do not use the Fukuda (1994) definition. They use the Oxford definition to diagnose CFS. The Oxford definition requires six months of debilitating fatigue and NO physical conditions that could explain that fatigue. Conversely, psychiatric conditions are NOT excluded from Oxford. I had an email exchange with Simon Wessely in 1996 when he told me that I did not have CFS because I have NMH and Hashimoto’s thyroiditis. They also consider a failed Romberg test as exclusionary because it is a sign of neurologic abnormalities – in contrast to my original specialist, Dr. Marsha Wallace, who used my inability to pass a Romberg test as diagnostic for The Disease (as is also true for the Canadian Consensus Definition of ME/CFS.)
The British psychiatric view of CFS is that it is an “inappropriate illness belief.” That is why they prescribe Cognitive Behavior Therapy – not to help patients adjust to the disease, but – in their own words – to “reverse” the disease, to cure the disease. Graded exercise is recommended to get these poor women who have been deconditioned by their inappropriate illness beliefs back into shape and able to return to work and household.

Is THIS what CDC thinks of our disease? If not, why does CDC’s website suggest cognitive behavior therapy and graded exercise, perhaps with an SSRI added and something to help patients sleep, as the appropriate treatments for this disease? Why is there a direct link to the website for Peter White’s psychiatric practice at St. Bart’s hospital in England?

#108~ RE: Problem with Trine Tsouderos's reporting on XMRV

I attempted to comment on another bloggers post, but I guess today I must resemble Jerry Weintrab's autobiography, "When I quit talking then you will know that I am dead." Needless to say, it frustratingly kept telling me my reply was too long but instead of having a functional character count, as some reply boxes have so you could know how many characters you had left to use, it would only tell me at the end that I was over the limit.. I gave up and said I would reply over here..

So I urge you to read the Original blog First, so you will know what I am replying to , OK? If you have  a short comment to leave to Help the blog get ratings it would be appreciated. That blogger doesn't usually post often but when they do, they usually have put a lot of time into their research and are ON Target. Thanks for caring about this topic and helping to Stop the Inaccurate Biased reporting.

Original Post

I am adding my longer comment below:

Let's start with the ongoing Dr. of the Original Incline Village cohort and his opinion as expressed in this short audio interview.

Dr. Peterson about XMRV, Oct 2009

If Trine somehow missed Dr. Alter's slide, this might clear up any confusion of the facts..

Let's not forget to show her the video about Dr. Bell's kids and how after 20 years later ~ 70% of those tested on the first go-round, came up XMRV+. Gee that kinda matches the Science paper 67% I think ? Maybe upon further testing the numbers might also go UP higher ... Another specific cohort testing positive. 

And Dr. Bell thinks this will cause a Paradigm shift. Maybe she missed this tiny tidbit. 

Trine can hear and watch the video here:

Dr. Bell's Lyndville Video

Maybe Trine also skipped Dr Cheney's report last year about his cohort of patients that were also testing XMRV+ ?

I was also married to an Investigative Reporter that was a Capitol Correspondent which is why I am living in my state capitol and I know the difference between "valid legit journalism" and rag paper writing. Obviously both the writer and the editor are at fault here cuz the editor must not be informed and is MIA or asleep on the job like that Reagan airport traffic controller.

Either way the result is a sloppy job.

And since I have also tested XMRV+ by antibody that lets me know that I really am, cuz "you simply can not grow antibodies from any lab contaminants" .. unless the lab contaminants were in the lab that was preparing the vaccine you were given as a young child maybe ? humm

I also worked in a hospital for 17 yrs in the 70's-80's and was on our Hospital Health + Safety Committee and was our Rep. to go to the Conferences in San Francisco at at the height of the HIV outbreak.. so many of us know what a RV smells like, acts like and I have never yet seen one to cause health, quite the contrary.  By the way, XMRV has even been shown to be linked to Lymphoma 

(and originally Prostate Cancer) and that was what my mom died from.

Dr. Singh's patents are also building up and it seems that 25% of the breast cancer patients tested also were XMRV+. I can't wait for her paper to come out.. the spin rag writers will be going wild again... Think we are joking ? Here is a slice of her "dark colored breast tissue" that shows which parts are XMRV+

Oh yeah, it's also time for "The Band Play On" and Deja Vu for us 20 years all over again.. Let Trine read this and see just why we are so skeptical, because we have already seen this rerun and there really needs to be some new better factual reporters. Currently we seem to have only 2 that are after the truth. LOOK at the date on this one, please.... and check the Dr's names~

20 year Deja Vu article

 The evidence is building up here, but where the "original contaminant" came from is what is in question. It was certainly NOT in any of the studies that resulted in published papers with positive results.. Whether it was a lab accident way back when possibly with the vaccines~  gee funny that many Gulf War Vets got ME/CFS  after all of the vaccines they were given, even a number of those that never actually went abroad.. Hummm

OR, even worse, maybe there was actually some biological scientific studies being done for bio-warfare purposes and the ticks and fleas that were meant to be the "carriers" accidentally got blown the "wrong way when a low barometric pressure came in and they were blown from Plum Island back onto the Mainland near New York where there have been documented Lyme outbreaks that are now testing XMRV+... Hummm

Whatever the fricken reason.. the bottom line is that we "are testing Positive" and legitimate medical research to help us needs to be done because a retrovirus, no matter how you got it, is a dangerous thing and needs to be treated ASAP. Got a headache take an aspirin, but what do people with retroviruses get currently ? Nada, unless they choose try some of the old HIV drugs because real current serious research to help us has NO Place to be budgeted for and done. Only HIV and HTLV-1 and 2 seem to be legit. Humm funny.. Wonder why ?

If Trine or Dr. Oz or any other wealthy politician had a new human retrovirus how much you wanna bet that the research money would suddenly show up ? Think they would wait for 25 yrs and for 17 million to get it ? I would not want to wish this illness on anyone, but seriously folks, someone had better start "getting REAL" pretty darn fast ! The lives this thing is costing, the $20 billion a year it is costing our economy, the families it is bankrupting, all of this because the CDC has watered down the definition that was only meant to be a description of the Original Cohort, and they have done nothing but water the real biomedical symptoms with psychological symptoms that might be side effects but certainly are most not primary causes of this illness. Had they cared to even follow the first 2 rules of good medicine at the time this would have not happened :

#1~ Take a good medical history 

#2~ Do NO Harm.

They have violated both of these.. 

They did not even care to talk to the patients in that original cohort, nor examine their symptoms, they only cared to look at the sterile negative test results, and because you can't test Positive for a test that has not been invented yet, they chose to make up new symptoms and funnel everyone over into the Psych dept. when they were the ones that should have been receiving the counseling. 

Obviously, they are not capable of disease control or prevention if they are not even willing to honestly evaluate the original patients of a particular cohort.. oh that's right.. they wanted to call it hysteria which would have no cohort.. another attempt to make this a woman's illness which it is not. The men that are testing XMRV+ take exception with this and I don't blame them.

(root word: hystera) 

Origin of HYSTERIA

New Latin, from English hysteric, adjective, from Latin hystericus, from Greek hysterikos, from hystera womb; from the Greek notion that hysteria was peculiar to women and caused by disturbances of the uterus

First Known Use: 1801

Viruses and retroviruses do not follow the rules of countries and obey "do not cross" any country borders. Why would M.E. be in Canada but not be able to cross not the USA ? Especially with today's convenient modes of distant travel for humans let alone birds or other insects.. why would a virus behave according to CDC limited thinking beliefs, duh ?

CDC the cohorts are showing up and now testing positive for XMRV. 

World wake-up.... I had 5 close friends die from AIDS, but even with AIDS only one life is taken. With ME/CFS and now with a retrovirus showing up in 4 of the original cohorts and many others that are being tested now, guess what? This IS contagious and you have been negligent for the past 25 years. 

The joke amongst we the patients is that "the Good News is: You don't have AIDS.

The Bad news is you don't have AIDS."

This disease will kill you 25 years earlier but will give you many other diseases along the way, cost you and our medical system a lot of money and frustration, you will be belittled and treated like you do not have any biomedical illness. 

They keep telling us "it's all in your head", but actually just like the scans Dr Cheney had done originally with his own  money up at Incline Village of the the brains of the Original Cohort, when showed to a friend of his that was  another Dr., that Dr. told him, "These look just like the scans of my patients.. and they have AIDS." So guess what, it's not all in our heads, close.. it's IN our Brains... Isn't that where M.E. goes ? Why have you not been looking there if you keep thinking it's in our heads Then SCAN THEM darn it... Enough of your double-talk and enough of this poorly researched reporting... 

Either "get the facts correct" or keep your computers turned off and do not publish any more pyschobabble cuz we have heard it all before.. and sadly for you we are not dead and we do remember things and the internet and laptops became mainstream and your errors have been documented whether CDC or reporter.

As another saying goes.. 

"It's either time to lead or get  out of the way"..

To the CDC is say:

"Take DOWN that CBT and GET junk off of your website." You are showing that you are still functioning in the 17th century by doing so. This is the 21st century. Please start behaving like a First Class Medical Research Facility or we will make sure you are replaced with one. You are digging your won grave and playing ostrich in the meantime. Discard that abomination that you call your "5 year plan" and put someone in charge of rewriting it that has some functioning brain synapses and dendrites. I think you have been "buying your own BS for far too long."

We even have many in the medical profession that have it because we have been on the front lines of where all of these viruses were.. Trust me, these people believe "really FAST" that this is not "all in our heads," because they like most of us were active and not depressed when we were suddenly struck down by this virus.


ALL of the Dr's that have Seriously worked with these cohorts have "Always Believed" that a virus was involved, and its time that everyone start waking up, before someone in your family gets it next.
 
The first job of a virus  is to infect, duplicate and spread.  Guess what~ Retroviruses are excellent at doing this because they get into your DNA. I believe that the CDC forgot this or does not want to face another retrovirus that they ignored and let spread. Their hands were full with HIV and so they let this one go because people were not dying "instantly."

Clearly, there are only a few leaders regarding this topic both in the medical research field and the reporting arena... and we know who they are.. and who they are NOT. 
At this point~ Trust MUST be Earned.


Those that want to have any serious honest constructive conversations with us on any topic know how to find us and we will be very open and willing to discuss things realistically.

ShareThis