Friday, July 15, 2011

Job with NIAID - Director of Extramural Activities

The person who holds this position oversees, among other things, extramural
grant funding, including funding of grants for ME or CFS research that involves
infection or immunology.

Here are the details:

http://www.niaid.nih.gov/about/working/Documents/DEADirector.pdf

-- Liz Willow

Tuesday, July 12, 2011

How NOT to Treat Yourself When Chronic Illness Strikes

 
"It took an intense moment of physical and mental suffering for me to finally let go of blaming myself for having become chronically ill"
 
* * *
There are too many twelve-steppers in today's society, who've been told that they need to take responsibility for everything that happens, which has resulted in the concept of "accidents happen" disappearing. 
 
But in some cases, the attempt to force someone to take responsibility reaches absurd heights.  One of my closest friends went to her long-time doctor, who in a moment of forgetfulness prescribed something she's allergic to, resulting in a stroke and, eventually, death.  I have had people tell me that I need to take responsibility for my friend's death because I could have told this intelligent woman to drop her doctor (who had no prior malpractice lawsuits), because I didn't call her immediately after the appointment to find out what he prescribed so that I could look it up and tell her not to take it, because I wasn't riding in the car with them to give her CPR en route to the ER, etc., etc., etc.
 
There are people at fault for her death -- the doctor and pharmacist who both missed that this drug should not be given to someone with that allergy -- but I refuse to accept that I had any responsibility in this -- I was 30 miles away when it happened.
 
Similarly, I've been told I got sick because I ate too much junk food (I ate mostly baked chicken and fresh vegetables), had a sedentary job (but I exercised daily), had bad health habits (ummm, I've never smoked, gave up coffee in the 1970s, rarely drink, don't do drugs....), or just plain didn't pray hard enough to be healed.  Entire churches and a friend's whole convent were praying for me; I don't think it's a matter of God hasn't heard about my condition, but that He has his reasons for not curing me.  And I'm not going to take responsibility for something so clearly beyond my control.

Monday, July 11, 2011

More on CFLs from Margaret

Hello,  I am contacting you all respectively, and collectively, as advised by Senator Tom Harkin's Senior Counsel and Disability Policy Director for the US Senate Health, Education, Labor, and Pension (HELP) Committee, Andy Imparato.  He requested that national organizations of persons with disabilities adversely impacted by CFL and other florescent lighting make requests at this joint moment in time for the Committee's bi-partisan support of the BULB Act (HR91) and companion Senate legislation.  As you may know, this Act is an amendment to the Energy Act provision phasing out incandescent lighting beginning in  2012. The House version has been promised by Chair Fred Upton, to be out of committee THIS WEEK, July 15 for an up or down floor vote.  So time is of the essence in making these requests - hopefully no later than Monday or Tuesday to allow the information and requests to be absorbed.  The US Department of Labor's ODEP-funded site, the Job Accommodation Network, lists alternative workplace lighting for this in many  disabilities, including brain injury, photosensitive epilepsy, migraine, lupus, CFS and others. See www.askjan.org.  This problem currently affects persons with photosensitive disabilities  in the work place.  This ban would take that even into their own homes. Advocacy is urgent at this critical juncture to prevent further harm  and civil rights accessibility violations of persons with disabilities adversely  impacted by lack of access to non-CFL or fluorescent alternative lighting.  Access will be extremely limited by the 2012 phase-in of CFLs and fluorescent lighting, and banning of safe incandescents under the Energy Act.  Christina, we have spoken before in the past in your position with Lupus International, and you shared your support on this issue and medical literature on how the properties unique to this type of lighting adversely impact persons with lupus due to the UVA/UVB  component.  Sandy, I spoke with someone at the Epilepsy Foundation over the past  several years, and Andy Imparato gave me your name and email and strongly suggested  that I contact you and others to contact him directly, as we informally join  together and ask them to intervene with their support to pass the legislation, and to share the  information with colleagues in the House.  I have read the work of Professor Graham Harding,  President of the British Society for Clinical Neurophysiology, as I have temporal lobe epilepsy with a  photosensitive component. My seizures only occur in this lighting, as well as strobe, visual fire  alarms, CRT computer monitors due to the critical flicker frequency rate (CFF), and red/blue  component.  I know that The CFIDS Association has been a strong and tireless  advocate for persons with CFS, fibromyalgia, and Gulf War Illness.  We have had quite a few reports  from patients about this, and would appreciate you contacting him as well, on behalf of persons with these  disabilities.  Mary, as a strong governmental advocate for persons with  MCS/environmental illness, we would appreciate your contact also regarding the lighting issue, and  know that you have addressed it in one of your reports.  Jerry Straub of CFLImpact  (www.cflimpact.com) and I have been working together since 2008 on this advocacy project.  Jerry, a former  mechanical engineer and consultant to the Ministry of Defense in Saudi Arabia during Gulf War I, has  traumatic brain injury in the vestibular portion of his brain.  The design of CFLs and their CFF and EMF "dirty  electricity" cause him to lose the ability to walk/stand that he had regained through neuro-optemetric  training.  Dr. Owen Z. Perlmann, a nationally prominent physiatrist is willing to speak on this topic in  the media or government.  Dr. Kenneth Ciuffreda of SUNY has also published a recent paper on this connection.   With our returning Gulf War Veterans with TBI this is of utmost priority.  I have scotopsia and temporal lobe reflex complex partial epilepsy  triggered by the flicker rate (CFF), blue/red color, and EMFs in CFLs.  This occurred when I had  tertiary neuroborreliosis, EEG seizure activity, CFS and MCS diagnoses, after coding and being off  of oxygen too long.  Helen Irlen, Executive Director of the Irlen Institute, where work with  ADHD, dyslexic, autistic and similar populations has caused them to issue a position paper and petition  supporting the BULB Act. Professor Temple Grandin, a person with severe autism and recent HBO  movie fame, has spoken out requesting more NIH research issue on florescents as problematic to persons with  autism/aspberger's syndrome on CSPAN-2 and in her book "Thinkng in  Pictures."  There is further information on medical papers, videos and media  coverage on the www.CFLImpact.com website. You may contact Jerry Straub directly by phone at (517-263-0760) if you  have further questions, or email me.  In close, we request that you contact Senator Harkin's office, and the  HELP Committee directly through Andy in Washington at 202-224-8535, and/or  andrew_imparato@help.senate.gov. He is awaiting your timely requests for the Committee to join in support of the BULB Act amendment to the  Energy Bill ban on incandescents as a disability, health and civil rights issue.  Thank you all so much.  Now is our time and moment.  Sincerely,   Margaret Holt Baird, Esq. mholtbaird@aol.com  

CFS and College

From Pat Fero:
 
THE CHRONIC ILLNESS INITIATIVE, DEPAUL UNIVERSITY, FOLDED INTO THE STUDENT DISABILITY OFFICES. CALL 1 773 325 1677. THEY DO ONLINE UNDERGRADUATE DEGREES AND HAVE GOOD, INDIVIDUALIZED ACCOMMODATIONS FOR ME AND CFS STUDENTS. PLEASE PASS ALONG.

URGENT: HR 91 BULB Act re Incandescent Bulbs

www.sacbee.com has an editorial on this subject today -- comment away!
 
 
 
We have gotten CFS, FMS, GWI, MCS reports of adverse effects of CFLs and fluorescent
lighting.  Many don't know what is wrong - they just don't "feel right" in this environment.
There are recent studies and position statements from medical charities and health care
providers regarding adverse impact of the critical flicker frequency rate (CFF) and/or
UVA/UVB, and EMF "dirty electricity" in these lights on persons with photosensitive epilepsy,
mild traumatic brain injury, migraines, lupus, diabetes, cardiac arrhythmias, autism, ADHD,
scotopsia, XP and others.  Please check out the website, www.cflimpact.com for further
information.

For this reason we have been contacting various representatives and senators with
information on the problem with depriving persons with these photosensitive disabilities
of the alternative lighting accommodation of incandescents which have none of these properties.
The Energy Act of 2008 contains a provision that will do this in a phased out process that begins
in January.  The Better Use of Light Bulbs (BULB) Act, HR 91, and its companion Senate bill
would stop this by removing the ban; giving time for the private sector to do more on energy-
efficient alternative lighting that does not pose a risk to persons with disabilities, and to healthy
people by the potential of toxic mercury poisoning during breakage incidents.

The creator of the incandescent light bulb, Thomas Edison, had dyslexia himself.
 
Please contact every member of Congress regarding this House of Representatives Bill
that has been promised to come out of Committee to the House Floor THIS WEEK - JULY 15
for a up or down vote.  The next two to three days are URGENT.  NOW IS THE TIME!

Canada has already delayed the implementation of its "green" ban by two years after scientists
and advocates educated decision makers.   Right to Light, based in the UK is now advising
persons with these disabilities to stock up on incandescents.  This will not take care of the
problem of limited access to public and private facilities, only provide safe lighting for their
own homes.  Without this, sunlight and candlelight are the recourse.

Speak your voice on this issue while the time is crucial for it to be heard.

Thanks so much.

Margaret Holt Baird
Disability and Environmental Activist
CFS/FMS/MCS/Tertiary Neuroborreliosis/Photosensitive epilepsy diagnoses

XMRV-positive activists raising money to test man's wife for retrovirus