Like approximately 1 million Americans, I have family members who suffer from the devastating
neuro-immune disease ME, also known as Chronic Fatigue Syndrome (CFS). It is as
disabling as MS and many people are sick for decades.
My sister has been sick for 18
years and is unable to work. It can strike any racial, ethnic or socioeconomic
group and at any age. Many children have the disease and some do not recover
and never have the chance to complete their education, go to college, have a
career, marry or have a family.
Dr. W. Ian Lipkin of Columbia
University at New York, called ‘the world’s most celebrated virus hunter’ by
Discover magazine and well-known for helping to contain the SARS epidemic in
China, is raising money for a study of the bacteria, viruses and fungi in the
gut and their role in ME/CFS, using sophisticated DNA sequencing techniques.
Dr. Lipkin believes that the gut
microbes are ‘where the action is’ in this terrible illness. This research
could lead to an understanding of what causes our disease and to treatments.
I’ve donated to this research and
I hope your readers will too, via www.microbediscovery.org.
Thank you,
Sherone Taylor
Thank you SO much sis. I'm having a rough day today so a little light can help a lot. There is something about ME/CFS that ppl may not know: in the US it is still not considered an illness by the CDC, FDA and thus Medicare, Medicaid and insurance doesn't pay for the treatment and research. There are no federal grants for an illness that isn't yet recognized.
ReplyDeleteThe reason Dr Lipken has turned to crowdfunding is because his research is ready to be promoted but there is no money to do that. The only experts in this field are brave and self-proclaimed because they are not taught this in medical school, it is not a recognized field of study and they can't bill for it directly. It bills under the 30 or so different symptoms. Horrific.
There are over 1 million of us in the US, about 450,000 in Canada (where it is now recognized) and millions more worldwide.
Please help us get shorthand for ME. When I say I'm in pain it could be any of 7 different kinds of pain and that doesn't mean levels, it means kind. The worst kind is electrical where even wearing clothes is painful.
When I say fatigue it could mean my vagus nerve is signaling my brain that I need to lie down because it detects invaders. It might mean I just slept 13 hours and woke up feeling worse than when I went to bed.
When I say: I'm sick. There goes April. It is because my immune system numbers are low and my viral load is high so I can't fight off sickness very well.
I know Dr Lipken is on the right track. Gut flora treatment put me into partial remission for 7 years. I was able to finish school one class at a time and then work part-time. But the remission is now undone and I'm worse.
Please help and please help us educate people. Thank you!!!
Thanks so much for validating our invisible illness. I want nothing more than a treatment for both of us that doesn't involve swallowing a bunch of pharmaceuticals. Char has been amazing in the way she researches this illness training doctors along the way.
ReplyDeleteWalter Irvine blogs collections of observations and amusing stories based on real experiences, as far as you know. You may read his posts on Walt's Inquisitive Ramble at: http:/www.waltsinquisitiveramble.blogspot.com