Below is the work of a fellow ME patient: the activist extraordinaire and captive unicorn Lilan Patri. She knocked herself out, pretty literally, pulling this together for us all: some organizations endorsed by Actual Patients, and worthy of your support. Please, do help. - Creek
Lilan Occupies Her Bed. The excitement is palpable. (Yellow police tape marking protest area)
Wanna Donate? Some ME/CFS Options
16 July 2013 at 19:11Hi Good People,
Recently a friend asked me how she might best make a contribution toward ME/CFS research. Having been somewhat out of the loop, I posted on FB for suggestions from fellow patients. I was surprised how few I got, but then... not surprised. Two years ago, the ME community put all its faith in the WPI and its XMRV research and worked tirelessly to fundraise. Then, oh my God, the WPI turned into a BIG HOT MESS--and since then many patients I know have been hesitant to throw themselves behind any one organization and downright leery of soliciting donations. But I still get people asking me. So I compiled the suggestions I did get, and I snooped around online to check them out, and I made a list.
Let it be known: I am not a scientist. I do not have a brain for facts. I do not understand a good half of what I read on these research sites. I cannot predict which institute will go up in flames. What I wrote might be exquisitely inaccurate. I am not an authority on anything (except probably housebound loungewear and my cat Leopold). I also might have left off the BEST organization EVER.
Okay, good. Now, these places, I think, might be worthy of donations. A few research institutes (my top picks first) and, to sate all appetites, a few advocacy groups below.
Thanks for caring enough to read this far. And thanks to anyone who feels like donating.
Snuggles from Berlin,
Research Research Research
SIMMARON RESEARCH (USA)
The highly regarded brainchild of the highly regarded Dr. Dan Peterson, who has been treating and studying ME/CFS patients in Incline Village for over 25 years.
"Simmaron Research is a nonprofit organization dedicated to advancing scientific research, potentially leading to the discovery of diagnostic markers and effective treatments that will ultimately improve the quality of life for people suffering from CFS/ME and related neuroimmune disorders."
Simmaron implements a multidisciplinary approach (immunology, virology, genetics, exercise physiology) and cites as novel its collaboration with leading scientists worldwide as well as a repository of biological samples and data records from nearly 3 decades worth of patients.
Simmaron is now seeking donations for two new studies: Arthropod-Borne Disease in Post-Infectious Fatigue; and Prevalence of Clonal T-cell Receptor Gamma Gene Rearrangements in CFS Patients with Herpes Virus Infections. Ongoing studies include (among others) pathogenic mechanisms of ME/CFS, cytokine abnormalities in spinal fluid, and multi-site clinical assessments to establish subsets of ME/CFS patients. Please check the Website for more details. Gamma gene rearrangement?! I know nuffink.
OPEN MEDICINE INSTITUTE (USA)
With much focus on clinical and genomic data and biomarkers, OMI appears to be another scientifically advanced contender. OMI spreads its reach to a range of (challenging) illnesses.
"The Institute is currently focused on understanding, developing treatments, and finding cures for neuro-immune diseases including ME/CFS, Autism, Multiple Sclerosis, and other conditions [Lyme]. There are also plans to apply the Institute’s model to a range of diseases including cancer and Alzheimer’s—diseases which have proved difficult, if not impossible, to decode and treat using today’s standard approaches."
In regard to ME/CFS, Open Medicine's priority is the multi-pronged OMI-Merit Initiative, which includes trials of Rituximab and Valcyte (alone and in combo), the development of an international Neuro registry and Biobank (data sampling), assessment of the efficacy of viral testing, of current commonly used medications, of natural and OTC substances--and a whole lot more. All on the fancy Website.
MT. SINAI ME/CFS CENTER (USA)
This center is in its infancy. There's no way to know its efficacy. Eh, I'm including it anyways: I like the initial study, and Dr. Derek Enlander has good cohorts on board plus the backing of a major medical school/ hospital. There's potential here. Let's see if this baby flies.
"The ME/CFS Center at Mt. Sinai is currently conducting a Post Exertional Malaise trial, due to be completed this year. The ME/CFS Center at Mt. Sinai has made it clear that they are interested in collaborating with other institutions in the pursuit of concrete research into this illness."
The current effort would be (perhaps?) the first large-scale study to demonstrate the detrimental impact of exercise on ME/CFS patients, and could potentially debunk the (bunk) UK PACE trial of 2011, whose (bunk) outcome further inculcated the (bunk) treatments promoted by the CDC... and every other governmental body everywhere.
Checks made out to Mt. Sinai Medical Center, with Fund Number 02855525 specified in the Memo section and mailed to:
Mt. Sinai ME/CFS Center
860 Fifth Avenue
New York, NY 10021
Advocacy, Awareness, Treatment
NEUROIMMUNE ALLIANCE (UK)
An education and advocacy group whose most pressing goal is to open the first clinic in West Sussex with a multidisciplinary approach to ME, and serving the severely afflicted. West Sussex has one clinic for over 4000 ME patients, where no drugs, no supplements, no blood tests and no treatment other than a few group therapy sessions are given.
Beyond this, the Alliance's aims include training programs for GPs, reassessment of all patients using International Consensus Criteria, and reorganization within the UK medical system such as the shift of ME/CFS services from mental health to neurology.
RESEARCH: The Alliance also hopes to study methylation and glutathione depletion in patients with toxicity, Gulf War Syndrome, ME, and in World Trade Center recovery workers.
A grassroots organization devoted to building awareness about neuro-endocrine-immune diseases (ME/CFS, fibromyalgia, tick-borne infections, multiple chemical sensitivities / environmental illness, and Gulf War syndrome) and advocating for better government policies pertaining to these diseases.
"Our main goal is to improve patient quality of life, which includes direct assistance and increasing access to knowledgeable healthcare. This is done through medical professional educations and working toward creating an NEI (neuro-endocrine-immune) Center."
CHANGE for ME (Australia)
Founded by my friends Lee Lee and Amara and based in Australia, Change for ME has in its short history staged a live event (a major coup for the bed-bound!) and spread the word online. Without awareness, there can be no change: this is its philosophy.
"We advocate for greater understanding of the condition in the medical community and general public; increased support and medical access for ME and CFS sufferers to help address the poor quality of life and elevated risk of suicide; more equitable financial support for sufferers through Medicare and PBS."