Making A Difference
Of course this is an important day for advocacy and the biggest advocacy effort is occurring right now in Washington DC where the Solve ME/CFS Initiative (SMCI) and ME Action have teamed together to tell our politicians that today is the day to learn about and support chronic fatigue syndrome (ME/CFS).
- Do That Here – I cannot believe how simple they made this.
- Protest Virtually with the MillionsMissing protests – actions are occurring in 12 cities around the world. Find out how you can virtually (online) support them.
- Enroll in the SMCI’s Biobank/Patient Registry – as funding increases, having a large Biobank/Patient registry is going to assume more and more importance. For one, it’s going to allow research to proceed more quickly and cost less.
- Give Your Genetic Data to Dr. Klimas – Studies indicate that ME/CFS has some genetic roots. Help Dr. Klimas decipher ME/CFS’ roots by providing the genetic data you have from 23andME or Ancestry.com to her. (All data is de-identified.) Check out a blog on the project here or just enroll here.
- Sign Up with ME Action – support our international advocacy portal.
- Contribute to MEPedia – take some time and contribute a little something to the online ME wikipedia.
- Have Your State Proclaim May 12th ME/CFS Awareness Day – Massachusetts did it. Find out how they did that here.
“America’s Hidden Health Crisis” – The Feds Celebrate May 12th (!)
This year even feds are celebrating Int. ME/CFS Awareness Day. That is a good sign…
The CDC actually called ME/CFS “America’s Hidden Health Crisis” in their piece “America’s Hidden Health Crisis: Hope for Those Who Suffer From ME/CFS“. Those are strong words from a traditionally very conservative group. They also used one of the more evocative images of ME/CFS I’ve seen. In the piece they stated that:
“ME/CFS affects men, women and children of all races and ethnicities. Between 825,000 and 2.5 million Americans are estimated to have ME/CFS. Yet, this debilitating illness remains largely invisible to most Americans, despite costing U.S. society an estimated $18–59 billion annually in medical bills and lost incomes.”
And they listed a long set of activities they are working on in ME/CFS.
The NIH posted that May 12th is International Awareness Day on their ME/CFS page and linked to NIH Director Collins’ and Dr. Koroshetz’s inspiring recent blog, “Moving Towards Answers on ME/CFS“, on the NIH’s commitment to ME/CFS. (Note that the Director has rarely, if ever, written a blog declaring the NIH’s commitment to a disease. This time he did… Find out more on that here.)
NIH ME/CFS Intramural Study in the News – Check out two excellent recent media pieces on the NIH Intramural Study both featuring former journalist and now ME/CFS patient Brain Vastag.
- NIH launches study seeking answers on chronic fatigue syndrome
- NIH Study Aims To Unravel The Illness Known As ‘Chronic Fatigue Syndrome’
Learn and Spread the News
Buy Valerie Free’s Book “Lighting Up a Hidden World: CFS and ME” for yourself or others. This highly praised book – which was years in the making – covers both Valerie’s story and just about every important aspect of ME/CFS including the fight for better funding.
Sign Up to See the Film “Unrest” – Jen Brea’s film Unrest has been getting great reviews. It recently did a three-day stint at Toronto and is now in Vancouver at the DOXA festival and at the DocLands in Marin County, CA. Get a ticket and support a film dedicated to spreading awareness about ME/CFS – and doing it in a remarkably engaging way. Find out how to sign up to host a screening here. Follow Unrest on Facebook here. (A review of Unrest is coming up shortly on Health Rising).
Watch and Spread the Word on Jen Brea’s TED Talk on ME/CFS – Jen Brea’s TED talk “What Happens When You Have A Disease That Doctor’s Can’t Diagnose” has been seen 1,217,000 times. That amazing stat is a testament to just how good her talk is. It also means that several hundred million people in the U.S. and many more outside it haven’t seen it yet. Use your email and social media accounts to get this talk out to them and spread the word…..(Check out a short blog on the talk here.)
Dr. Patrick McGowan talks on his exciting, recently released paper on Epigenitics and ME/CFS in a CIIND webinar. Register here.
On This Day – Give Just a Little Bit!
In recognition of their work, give a small amount of money to an ME/CFS Organization. It will feel good – and they will appreciate it.
- The Bateman Horne Center – Providing patient care and collaborating with cutting-edge researchers.
- Health Rising – that’s us…Bringing the news week in and week out. See donation widget on right hand side of the page.
- Invest in ME – UK research foundation and patient support. Puts on International conferences every year.
- ME Action – Fighting for equality for ME/CFS patients around the world.
- The Nevada Center for Biomedical Research – Recently produced possibly first immunosignature for ME/CFS.
- The National Center for Neuroimmunology and Emerging Diseases – Australian research group dedicated to ME/CFS research believes they may have found a biomarker.
- The Open Medicine Foundation (Ron Davis) – featuring Ron Davis’s visionary “End ME/CFS” project.
- The Simmaron Research Foundation – Seeking to redefine ME/CFS through immunological investigation and collaborations with top researchers. Featuring ME/CFS expert Dr. Dan Peterson.
- The Solve ME/CFS Initiative – Funding cutting edge research, the Biobank/Patient Registry, advocacy, webinars and an information resource – the SMCI does just about everything.
Thanks very much for the round up of May 12th activities, Cort. Nancy Klimas’ study is very interesting. Regarding the Neanderthal gene results,that’s also very interesting. I wonder if this could be a common thread in PWME. I’m looking into sending my results to Dr. Klimas. Thanks again for doing such a super job of keeping us updated!
Does anyone know of activist groups in Canada? My husband (the one with ME) and I are U.S. citizens but we are permanent residents in Canada, so we are in a bit of a grey area as far as government representation (i.e. Our “official” representation is in the U.S., but as our healthcare is Canadian, decisions about our healthcare are made by the Canadian federal and provincial governments).
Anywho, please let me know if there are any similar groups/movements going on in Canada!
Here you go 🙂
https://www.mefmaction.com/
There are local groups as well.
Hello Cort,
Your dedication to providing valuable updates on ME/CFS has given me hope. I am inspired to host a screening of Unrest, persuade my state (NY) to proclaim May 12th ME/CFS day and, heck, march on capitol hill with my cane if I have to because this illness can crush your spirit.
My 5/10/17 MD appt to discuss my elevated epstein-barr antibodies among other labs proved pointless as I looked him in the eyes with tears streaming down my face and said, “I just want my life back”. He replied, “I can’t help you.”
I am 56 yr old RN with ME/CFS and just completed a 10 month CCS (Certified Coding Specialist) college program. I struggled with pain and profound fatigue but I was driven and focused to get the CEU’s so I can sit for the national exam.
I hope my drive will be useful for ME/CFS organization.
Very inspiring Mary! This illness can be an illness crusher. It’s inspiring to hear your commitment despite the pain and fatigue you’re experiencing. We will prevail! We will get good research and we will get good treatments. Why? Because ultimately we cannot be denied. This illness is too devastating for the medical community to continue to turn its backs on it…I believe the tide is turning…
It feels like momentum is building. So many ME/CFS patients are coming together and demanding to be taken seriously; to be recognized and to have the rigors of this disease understood by doctors, the general public and our elected leaders. For the first time in years it feels like maybe we are being heard. Wow. So much yet to be done, but today was a good day.
Thank you Liz. There is much to go but we are getting hear and we do have allies. (Plus we have our first ever full-time ME/CFS advocate.. (I am so happy about that :)). We need to recognize that while there is much to go that we have made progress – and be inspired by that – and build on it
Having had ME/CFS for 35 years with 2 years unable to work, I am much improved, cured? No. Living with occasional flattening crashes? Yes. It is heartening to see the impetus in research and the diminution of skeptism and downright denial. I have written a book on the experiences I have lived through. Titled ‘Dear M.E.’it is available as an EBook and hopefully soon as a paperback. We need all the help we can get.
https://www.amazon.com/author/audrey.brimson
So…this might be, or likely is, way off the charts, but what if the Neanderthal genes people have noted in their 23 and me results have something to do with metabolism, Dr. Naviaux’s dauer state, etc. Maybe these very old genes hold some of the keys to this terrible puzzle. I know it might be a broad leap in thinking, and, Cort, your blog only noted a couple people with more Neanderthal genes than the norm, but it is interesting to wonder. You never know. Research can take us into some unexpected places.
Addition:
It seems to follow, from what science has been telling us about our origins, that we possibly all have a small amount of Neanderthal genes. But, perhaps if an individual has a much higher percentage than the general population, this might have certain effects on their health, especially given such dramatic differences between the environment of thousands of years ago, and now. Maybe it’s worth considering. At any rate, it’s interesting.
I’d like to point out that fiction can be far more effective at changing hearts and minds than facts and opinion pieces, in my opinion.
There are ficitonalized treatments – memoir-like books – but I don’t seem to have figured out how to get major interest in my own novel with a CFS main character, Pride’s Children: PURGATORY.
It’s available on Amazon, and I have a standing offer of a free electronic review copy to anyone who will read, and consider writing a review (I know how limited our energy is – I don’t insist on the review).
Many other subjects have been popularized with fiction – this is my contribution. There will be two more volumes to the trilogy – it does take me a while to write them to a high entertainment standard – fiction requires all I have left.