grant funding, including funding of grants for ME or CFS research that involves
infection or immunology.
Here are the details:
-- Liz Willow
The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations (the most pertinent parts of long articles will be highlighted for the reader)
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 firstname.lastname@example.org. 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. email@example.com