The extensive publicity the IOM report received is changing things. Check out what Dennis Mangan recently noticed..
“I am amazed (and delighted) at how many people I meet who NOW have heard of CFS/ME (SEID)! Beyond public awareness, internal (government) awareness of CFS/ME will increase too. Now, the time is right…let’s convert that newfound recognition into some more funding and an NIH home!” Dennis Mangan
The IOM report is changing perceptions about ME/CFS
In a recent interview Dennis asserted that success will come for ME/CFS when it moves into a Institute and gets a real home. The Solve ME/CFS Initiative’s Research Chief, Suzanne Vernon, has apparently been saying that for some time.
Now the Solve ME/CFS Initiative is moving aggressively to take advantage of the opportunity for change the IOM report has opened up.
Big Briefing
“The briefing…. is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.” Solve ME/CFS Initiative
They’re putting on the kind of event only the Solve ME/CFS Initiative can, and it’s great to see them embracing this opportunity. On March 25th, they’re holding a briefing for the media, congressional leaders and executive branch decision-makers in Washington, D.C.
The next step is real change. The Solve ME/CFS Initiative’s briefing is designed to inform those with the power to do that.
On the dais will be actress Morgan Fairchild (a former patient (who knew?)), former IOM Chair and now fervent ME/CFS advocate, Dr. Ellen Clayton, and Carol Head, President of the SolveME/CFS Initiative.
The space for the event is filled up, but you can watch the webcast by registering here and learn more about the event here. I’m dying to see who shows up.
They’re also asking patients, beforehand, to answer the question, “if you now were well, what would you do tomorrow?” They’re going to use the answers in a slide show at the event. You can find a link to the survey here.
Tasha’s Story
“This disease is a poster-child for how language can get in the way,” Dr. Ellen Clayton
The buzz from the IOM is still reverberating throughout the media. The latest news piece to come forth “Chronic fatigue syndrome gets new name, enhanced recognition” is one of the best. It describes how an athletic Tasha Keleman got sick twenty years ago while in Angola and never recovered. Each story like this focusing on a formerly active and healthy person pins a dagger in the heart of the idea that ME/CFS patients are malingerers. This is the media – presenting moving stories that will stick in the public’s consciousness – at its best.
(Tasha’s story also brings to mind the foreign traveller subset for whom pathogen exposure probably plays a big role. From Tasha to Mary Dimmock’s son to former journalist John Falk to Anne Ortegren, a cadre of ME/CFS patients got ill during or not long after an international trip.)
Among other things we find out this disease would have been called if you were transported back to 1750. (You’ll never guess…)
Moving the Field Forward: P2P Report Is Next
The IOM report is working. It’s bringing new recognition to this disease.
Next up is the release of the Pathways to Prevention (P2P) report on April 14th. That report, which was designed to uncover gaps in research and treatment, is more comprehensive and will feature many more recommendations.
Next building block – the Pathways to Prevention Report in one month
It probably won’t have the cachet of an IOM report – the P2P process has been going for just a few years – but it’s a federally financed report that was produced entirely by people outside the field. That will give it a weight all its own.
Plus it’s got a great agenda:
“The goal of the Pathways to Prevention (P2P) program is to host workshops that identify research gaps in a selected scientific area, identify methodological and scientific weaknesses in that scientific area, suggest research needs, and move the field forward through an unbiased, evidence-based assessment of a complex public health issue.”
It will give us an opportunity to build on the momentum the IOM report has produced.
Cort, you going to run a story on the recent research from Brenu et al in Aussie?
Didn’t find much wrong with cytokines, other than IL10 being a bit low
Yes, I am
This is a very clever idea, Cort, to get people to say what they’d like to do if they get well!
Ryan Prior has been putting some answers to this question on his Forgotten Plague FB page recently:
https://www.facebook.com/CFSDocumentary?fref=photo
and Jen Brea got some very moving replies (had me crying within 30 seconds!) to the question, “What is the most compassionate word or giving act you have ever received?
(In relation to your illness.)”
https://www.facebook.com/canaryfilm/posts/538312202973184
If those replies don’t have the media/congress/decision-makers in tears too, they’re not human! I hope they might be considered as well to be put up as slides.
Every time I see an article, I tense up until I see if it’s a decent article or a head-slapper.
I didn’t know there was a foreign travel subset and would like to read more about that. I got sick after being hit with a flu-like virus following a trip to Hawaii, and with the mix of humanity coming and going from Hawaii, that essentially is foreign travel. I usually get a cold after a big trip and attribute them to the flight home because planes are flying petrie dishes, but whatever I got wasn’t a cold.
Yes, I became sick a few weeks after a trip to Mayanmar and Singapore. I was having diplopia, dizziness and weakness especially on my right side. I went to emergency but they could only diagnose the diplopia and probable dizziness from this. Over 6 weeks my symptoms did clear up but not for a long time. I was very active but started limping after swimming and I couldn’t turn properly when skiing. Everything went downhill (no pun intended) after that. So, yes, I’ve always wondered what I may have picked up when travelling even though all my blood work was normal or not too far off. That was in 1999. For the next several years I was encouraged (strongly) to get back to exercise. Of course that made me much worse. But I kept trying until I nearly killed myself, all the time wondering what was the matter with me? Was it all in my head.
Someone posed the question “what would you do if you were well tomorrow: If I were well tomorrow I know exactly what I’d do. Go swimming, skiing up at Whistler,hiking our beautiful mountains *we live near Vancouver BC), get back to teaching, go camping with my grandkids. oh I could go on and on.
I would hike the Pacific Crest Trail from the bottom to Canada 🙂
Our tests are just not sufficient yet to pick up the stuff that is going on.
I think almost everyone has gone through the process you did. Why can’t I exercise? Maybe if I just try harder….Is it all in my head…what a trip people go through with this disease.
Ah, the Pacific Crest Trail. Wouldn’t that be spectacular! Adding that to my growing bucket list. Two years after I became ill I fell into a depression, as many of us have when suffering with pain etc 24/7. My usual baseball season was starting up. I cried and cried and felt hopeless. I missed all the activities I used to do. My extremely inventive husband knew I also missed cycling. We went down to the states and bought a recumbent bicycle with 2 cantilevered wheels on the back. He then attached 2 large batteries to the back and a thumb press on the handle bar so I could pedal for a minute, more or less, then press my thumb on the lever and fly down the road. I never had so much fun. Of course these bikes are now available all over, but mine is super special, made with love.
The Simmarron Research Foundation would like to do a study that looks at all insect vectors from ticks to mosquito borne illnesses in ME/CFS. You guys would be a fascinating group to get checked out in a study like that.
I’ve only just found your blog Cort and I’m so encouraged after 10yrs with CFS. Thank you so much!
Glad you found us Kerry!
I became ill while I was spending the summer and abroad in Italy (I live in the UK) in 2001, and never recovered. I experienced profound exhaustion, dizziness and night sweats. I would like to read more about this subset of ME patients who got sick while travelling abroad. Great article by the way Cort! Thank you for everything you do for this community!
I know you guys are out there! I think it was John Falk who got ill flying back on a plane from Italy if my foggy memory serves.
I was an extremely active, healthy 26 year old when I suddenly became ill. I was in Panama, Central America with the National Guard. Nineteen years and counting…
It’s just amazing Molly. It brings tears to my eyes….
In the next month probably we’re going to have a killer way for people to tell their stories…….
It feels like a good time to go viral in some way, ice bucket style…
It may sound cliche, but the time couldn’t be better
Hey, I didn’t know about that subset either! I Would have to check my traveling dates, what with the poor memory and everything, but I had either just come back from Malawi, Cameroon or India. I really miss that traveling and it would be my first thing, complete with trekking and everything!
The saddest thing is that we’re in a first world country with the “best” healthcare and we’re ultra frustrated with how we’re being mistreated by the medical community. Doesn’t it make you wonder how people in all these other countries in the world are handling this? I wish someone would do a documentary on that.