#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

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#124- APA Bullying RE: DSM5 Watch site.

Please note that Suzy Chapman's blog, DSM-5 watch, has moved to
http://dxrevisionwatch.wordpress.com/.
The reasons are Orwellian, Suzy says here http://www.psychologytoday.com/blog/dsm5-in-distress/201201/is-dsm-5-public-trust-or-apa-cash-cow

"Until last week, my website published under the domain name
http://dsm5watch.wordpress.com/ .

On December 22, I was stunned to receive two emails from the Licensing and Permissions department of American Psychiatric Publishing, claiming that the domain name my site operates under was infringing upon the DSM 5 trademark in violation of United States Trademark Law and that my unauthorized actions may subject me to contributory infringement liability including increased damages for willful infringement. I was told to cease and desist immediately all use of the DSM 5 mark and to provide documentation within ten days confirming I had done so."

"Given my limited resources compared with APA's deep pockets, I had no choice but to comply and was forced to change my site's domain name to
http://dxrevisionwatch.wordpress.com/.

Hits to the new site have plummeted dramatically and it will take months for traffic to recover - just at the time when crucial DSM 5 decisions are being made."

Please spread the word.
***
PS: added by a friend:

Will the APA please recline on the couch?

When I attempt analysis of a situation or occurrence, I include questions like; ‘how else could things have gone’ or ‘how else could x have behaved’. Seeing alternatives often highlights the choices that have been made.

The APA letter to Suzy Chapman (see http://dxrevisionwatch.wordpress.com/) appears to be written in legalese to my untrained eye, so it may have been written by a lawyer acting on behalf of others. Therefore the wording of the letter does not give clues about motives or processes. The fact that it is legalese and is threatening does give information.

How else could it have been done? Perhaps a friendly email from someone asking if Ms Chapman would mind corresponding or having a telephone conversation about her website may have been an option. Or if more purposeful action was thought appropriate, a letter could have requested changing the domain name and pointed-out that the current name infringed copyright. It might have been nice if the APA had offered to compensate Ms Chapman for any costs and inconvenience incurred in helping with their request.

In other words, a collegial and civilized approach was feasible and threats and other heavy-handed tactics could have been saved for a last resort. They were not.

Therefore it appears that a choice was made to be heavy-handed. A major organization versus an independent citizen. It looks like bullying from any angle.

The APA are fussing about anyone using their branded ‘DSM’ name. Naming a thing is always symbolic of understanding something about its nature. Renaming is indicative of change and therefore changing its nature. This results in loss of the old identity. That the APA is in some respects reinventing itself with DSM-5 seems quite likely. The comfortable old identity, partly bound to DSM-IV is being lost so the organization is thrown into uncertainty. Rather like a person experiencing a significant change of role. They may be excited by new possibilities but at the same time feel the loss of the old way of being. This can lead to insecurity and any challenge to the identity – old or new, is felt acutely.

So here is an organization which represents perhaps the stodgiest of all the health specialities, conservative, authoritarian and awkward in relating to others that is having an identity crisis during its transition from DSM-IV to DSM-5.

Little wonder they are behaving somewhat hysterically as they appear to be in neurosis. The longing to cling to the known and trusted good-old-ways seems to be in conflict with the desire to modernize, get hip, and start relating to the real world rather than living in the deep and cosy recesses of its own bottom. The good-old-days when patients did what they were told and didn’t answer back are gone. The times when a few highfalutin 4 syllable words daunted commentators is past. It’s a brave new world.

Take heart APA. There is a valued place for psychiatry and psychology in this frantic modern world (as I hope my light-hearted ‘analysis’ shows).

Change will happen. Try to identify the unavoidable losses and make them a conscious sacrifice. Be accepting of uncertainty about who you are and what you are for – you cannot completely control these; only discover them on your journey into the future. Try to avoid imposing your own fears on others along the way.

Permission to Repost.

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#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

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#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 !!

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#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.

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#120~ Nevada Newsmakers Annette Whittemore Interview–Transcript

Following is the transcript of the October 26, 2011 Nevada Newsmakers interview with Annette Whittemore, for those of us that have difficulty with online video:

Sam Shad: There have been a lot of things swirling around and one of the reasons I wanted to have you on this program today is to clear up from what are rumor and innuendo to what are actual facts concerning the institute, and concerning the publication in Science Magazine of the study of a couple of years ago. Bring us up to date on exactly what’s going on. 

Annette: Well first of all Sam thank you so much for letting me come in and talk to you today because I know so many of the people out there that are suffering want to be reassured, and I think that that’s the most important thing today that we talk about from a very calm perspective of the work that is still going on at the institute. And you’re right, there have been, a lot of questions that have, that still remain unanswered about whether or not there is a retrovirus that’s associated with individuals who have this disease and many other diseases. And, I can just tell you that the work is still promising, that we are still headed down that direction very very methodically, and in an attempt to actually prove ourselves wrong. And so far we’ve been unable to do that when it comes to human tissue. But there’s several experiments that are left to be done, and so I can just say that we are still thinking along those lines, still looking very much at all pathogen possibilities, looking at the immune system deficits, and also characterizing the information. So, we’re very very much involved. There’s a study that will be starting November 1^st in which we will literally be testing one lab against the other, looking at different methods, and determining which methods are actually the most accurate when looking for pathogens such as a retrovirus. 

Sam: Now, when the article first came out in Science Magazine, the first study, since then, it wasn’t completely retracted. There was one person out of many that retracted a portion of their work. Could you explain that for us? 

Annette: That’s right. Dr. Silverman found in his laboratory that there was contamination of the samples that he had worked on, and therefore he removed his part, and I think he had one figure in this entire paper. However, there still is a lot of confusion about what we think we’re seeing in the actual patients. And what some of the doctors have described as XMRV, that was actually created in a laboratory. And so, at the end of the day, is there just one XMRV or are there several? And are we looking at a virus that’s completely different in our subset of patients versus the ones that were looked at in the tissues of prostate cancer. So far we’re saying “not completely different”… 

Sam: …and that was what was originally found.. 

Annette: Right, right. It was originally found in Dr. Silverman’s laboratory, and Dr. Silverman originally found it in prostate cancer. And the connection that Dr. Lombardi eventually they ended up looking at this together along with Dr. Mikovits and so it’s still an incredible puzzle. But we’re really excited about the fact that what has happened as a result of this has been so much more attention, so much more funding and a very very serious validation of this illness that just hadn’t occurred before the WPI came along. 

Sam: One of the things that I always like to refer to so the people who are not as familiar with this as we might be, that this is kind of like when they came up with, not a cure, but a way to control AIDS through the retrovirus. It wasn’t a one simple thing. It developed over many many years. And now, AIDS is not a death sentence. 

Annette: Absolutely, and it does take time. A process like this takes so much time to go from discovery to actual medicine within the doctors’ offices. But you know, that is what the WPI is all about. We are very much patient centered. We’re here to provide ultimate treatments that are going to be effective for patients, and we’re here to find the truth. So whatever it is, there..I have..I think we’re really trying to keep our egos out of it, and be able to say that t he most important thing, and to keep remembering it, is the patient, and getting effective treatments. So we need to understand exactly what’s causing the problems, and then we can figure out how to solve those problems. 

Sam: One of the problems is that in the field of medical research, there are tremendous egos. 

Annette: (laugh) yes. And it’s been very very difficult as a result. Sometimes the politics and the science…I think we talked about this before…can be extremely difficult. But in this case I really do believe, and I think the majority of people out there are very very sincere when they say that they’re concerned now about these patients. They’re concerned about getting these answers right, and we’re looking forward to working with them. 

Sam: Alright, let’s take a break. With Annette WHittemore when we come back. 

Sam: And back on Nevada Newsmakers we continue our conversation with Annette Whittemore. She is the founder and president of the Whittemore Peterson Institute. Your research director left who’d been on this program many times. What does this mean for WPI and who is the current research team? 

Annette: Well right now we are moving forward with the same research team that we’ve had all along, but I think a lot of people didn’t realize the depth of that team, and the number of people that are working there. So we’re still doing the exact same thing that we have been doing, in a very organized and collaborative fashion. We’ll miss Dr. Mikovits but Dr. Lombardi is stepping in and taking control, organizing and reprioritizing our studies. 

Sam: Now, you’ve been doing a lot of testing over the last couple of years for XMRV, so I mean, this is a real thing. It’s not that you’re testing for people and it’s not showing up. 

Annette: Well this is, absolutely. And you know, Harvey and I were always very very interested in continuing to ask that question every other month pretty much…is it real, is it infectious, has anybody changed their mind at the NCI, for instance. And I recently was up in Ottawa in a conference and asked two researchers up there, not ones that work with us directly. And they both said it’s real and it’s infectious. The question is, where is it in this population. Is it in this population of individuals, and more importantly, how do we develop the most accurate test that we can, so we can look at this particular virus. But I think again that we don’t want to limit ourselves to one particular virus strain, or one particular virus. We want to continue to keep looking at the question..is there an active retroviral infection in the patients that is coming from outside, rather than is there an actual endogenous or internal retrovirus that is becoming active. And you know this is exciting, it’s very very very complicated, and I don’t want to pretend at all to be a scientist. I get the, I’m so fortunate to be able to listen to all of this and be able to talk to you about it, but you know I’m a wife. 

Sam: You’ve become a sponge for this information. You’ve absorbed it and passed it on. But it’s interesting as time has developed now that you’re seeing that it may take more than one form. 

Annette: Absolutely. You know we see that, I like to tell some of the patients this, that we see the head … my understanding is that we see the head, we see the tail basically, if we were to see an animal…as a virus…but we don’t see the entire body. We’re not sure what’s going on, so the next step really is to get this material and get it deep sequenced so that we can fully characterize what it is that we’re seeing. 

Sam: One of the things, you know, in this economy obviously everybody’s taking a huge financial hit. But NV Energy, the power company in Nevada really stepped up to the plate with a huge donation. 

Annette: They absolutely did. They were phenomenal. Recently they donated a hundred thousand dollars to the cause. We’ve had Vivint and Chase Community Giving which are online community voting grant programs. I think we’ve raised about a hundred eighty five thousand dollars through that. And then just recently we had our fundraiser at the Atlantis. The Farahis who hosted that event were just phenomenal and they even donated back the proceeds from the event. 

Sam: That was here in Reno 

Annette: That was here in Reno, in September. I’ve got to say it was one of the best events we’ve ever had. There was so much love in that room. And even all the way down to the individual who came out from Nashville, Suzi Oravec, and gave her time, donated her time to provide music for all of us. It was an outstanding evening. 

Sam: Now, you started out as an ordinary mom. I shouldn’t say ordinary mom..a mom..
Annette:…Mom of 5 children 

Sam:…you were a spectacular mom. But your daughter Andrea contracted this. And when you were last on the program, you were saying that the treatments that are coming from the clinic are, were helping her. Is she still progressing in a good direction? 

Annette: She is. And you know we’re just really very very thankful that that’s occurred. And we’re trying very very hard to take a look at that, and Andrea thank goodness is willing to be a donor so that we can frequently check to see what are the differences between the times that she’s ill and the times that she’s well so that we can determine what is it exactly that’s going on, what are the treatments that are being most helpful, and why. We really don’t have all those answers yet. Those are things that we’re studying and I guess I’m just happy that she’s close by and she’s willing to donate her blood to that particular research. 

Sam: How are you being helped at this point by the National Institute of Health? Are they being helpful at this point? 


Annette: Well I think they are, because they’ve got a lot of researchers internally that are taking a look at this. And beneath all of the controversies that are going on in this particular virus, there’s some really good work. There’s some solid work that’s coming out. Not long ago there was a paper that said XMRV can infect neuronal cells for instance, or neurons, in the brain. And that was a key paper. I think there was a paper that also explained how easily it was transmitted, which would be, it’s very very unusual that a retrovirus could be transmitted potentially airborne. So there are some very interesting facts, and some good research is going on inside the NIH on this particular virus right now. 

Sam: Alright, so I always like to ask you to tell the folks out there who are watching, literally all over the world, what your advice is to them about where everything sits at this point in time. 

Annette: Well I think my best advice is to be able to remain calm, and to be reassured that the changes don’t mean that anyone’s going away, or that any way our commitment has been lessened. Or that the commitment of others has been lessened. In fact, it’s just the opposite. So there are more federal dollars today going into research in this particular disease. There are more individuals committed. An individual by the name of Glen Hutchins just committed ten million dollars to what he calls the Fatigue Initiative, and he’s brought new researchers into the field. Dr. Peterson has started a foundation and brought additional researchers into the field. So we’ve got some outstanding retrovirologists and virologists and immunologists that were never in this field before, that committed to helping us discover the answers. That is really the message… 

Sam: What’s your level of optimism over the next couple of years? 

Annette: Oh my goodness. I’ve got to say that we are making progress at a rate that is phenomenal. And ..on the one hand. On the other hand, we have to be patient. This is not an overnight process. I don’t expect it’ll take 20 years. I’m too impatient for that and I don’t think that’s appropriate. But it’s not going to happen tomorrow. So people need to sit back, take a deep breath, be reassured, and be hopeful. But, you know, let’s watch, let’s see what happens. Let’s be right about this. Let’s be good about this. 

Sam: That’s the most important thing, to be right about it. Always a pleasure. Thank you so much for being here.

***
Reprinted with gratitude and permission from Khaly:
http://cfsuntied.com/blog2/2011/10/27/nevada-newsmakers-annette-whittemore-interviewtranscript/

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#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


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