More than ever before, 2015 has been a year that has brought fresh hope to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients. The Institute of Medicine (IOM) and NIH Pathways to Prevention (P2P) reports confirmed the neglect and disbelief that have held the disease hostage for decades and strongly recommended action to improve patient care. Publications from Stanford, Columbia and Haukeland (Norway) Universities brought new insights into the biology. World-renowned scientists have joined the fight.
Stories about severely ill patients like Ron Davis’s son have created more public awareness, and the Tuller series brought greater exposure to the concerns with the PACE trial and psychogenic theories.
For the first time, there’s a sense that we have huge opportunities to change the future for ME/CFS patients. And just as importantly, there’s a sense that if we want to turn those opportunities into reality, then we need to find new ways to work together across the community to increase the impact of our voices.
To that end, a number of organizations, bloggers and independent advocates, listed below, have started having discussions to identify those areas where they can agree on goals and work together to achieve what is needed for patients.
Thus far, we have identified common goals to focus on, including the need to dramatically increase funding, to advance the research agenda, to resolve the definitional challenges, and to improve clinical care through quality medical education. We expect that this will lead to actions directed toward Congressional leaders, HHS and its agencies, and public awareness through the media.
To achieve these goals, we are going to need broad participation across the community. We will leverage the Groups featured on the MEAction.net platform to get input on these goals and to share proposals for joint actions. Because we are working as a loose collaboration, groups and individuals will be given the opportunity to opt in or opt out of specific actions.
“Working in this way and at this scale is new for all of us and we will be learning as we go. We also know that we won’t all agree on every tactic or policy direction. But we believe there is power in numbers and coordination and are all committed to taking advantage of every opportunity that we can to regain our future.
Please join us and share your ideas and enthusiasm. If you are interested in participating and providing input, you can join in the discussion on MEAction Groups here:
Signed
Patient Organizations
- Connecticut CFIDS Association, Inc.
- ImmuneDysfunction.org dba The Vermont CFIDS Association, Inc
- Massachusetts CFIDS/ME & FM Association
- The Myalgic Encephalomyelitis Action Network (#MEAction)
- Open Medicine Foundation (OMF)
- New Jersey ME/CFS Association, Inc.
- Pandora Org
- Phoenix Rising
- Simmaron Research Foundation
- Solve ME/CFS Initiative
- Wisconsin ME and CFS Association, Inc.
Patient Blogs
- Health Rising (Cort Johnson)
- OccupyCFS (Jennifer Spotila)
- Onward Through the Fog (Erica Verrillo)
- Race to Solve ME/CFS (Claudia Goodell)
- Speak Up About ME (Denise Lopez-Majano)
Independent Advocates
- Lily Chu. MD, MSHS
- Mary Dimmock
- Sonya Heller Irey
- Robert and Courtney Miller
- Donna Pearson
- Staci Stevens
Unfortunatly, here in Quebec, Canada, the medical world is truly behind the rest on the developed world in regard to this illness. They still saying that it is a psychiatric problem and refer patients to psychiatrists. They also say that it does not concern Infectiology and immunology. We had two experts doctors, both of them infectiologists but one is retiring this December and the another one very soon. The hospital where they work the CHUM. Do not want to offer this expertise anymore, and believe me, these two doctors had to fight very strongly to see their patients, they were always criticized by their colleagues. So, now we are all alone, the family doctors do not know and do not want to know anything about this illness and anyhow, they do not have the expertise to treat us. That is the situation here in Quebec, behind the rest of the world do at least 20 years.
I’m sorry to hear that, Agnes. Hopefully, the studies from other countries will continue and help all of us.
I’m so sorry to hear that.
Your story points to what doctor Peterson said about his fear of the fact that there are no new experts taking up the cause in the US, or as you say in Canada. The ones that are left with years of experience are getting older and will retire soon. That would be a disaster here as is is for you now.
This disease is too complex to follow the IOM’s advice to have regular GPs take the lead with our care. We are all too different, complex and can be too easily hurt even by well meaning doctors. I know I was.
Centers of excellence are desperately needed FAST so our experts can still have time to to pass on their knowledge before it is too late.
Sadly as a follower of US politics and especially this particular congress who can’t seem to pass anything no matter the importance and popularity, the hope is small. The only thing that moves things along is a drug that can make a profit or big lobbying money.
But fighting together is better than doing nothing and we are an international community. Any country that helps to figure out this disease can only mean more hope for the rest. I do think that something will break in the next few years that will make it impossible to stick with the psych diagnosis, in any country.
Good luck
Hi Agnes: I am on Ampligen for the second time, an experimental drug for ME/CFS that has been in the FDA approval process for twenty years now. It is available in Canada at certain infusion centers. You have to get your doctor to prescribe it and be near one of the infusion centers, because it is in IV form. It takes a minimum of two years to see good improvement, but it helps all of the ME/CFS symptoms: cognitive, energy, sleep, pain, etc., so it’s worth it. I hope you can try it! I will pray that the situation in Canada improves soon regarding treatment of ME/CFS.
I am extremely happy to see this happening. It is LONG overdue!
It is long overdue! 🙂 The US advocacy movement is finally waking up and getting organized! MEAction has been very important in providing a platform.
This is GREAT news! There is power in coming together and speaking as one voice. There is also a great responsibility in working together as a team so we are taken seriously. Thank you to all who work so hard in trying to solve the mysteries of this disease.
Suggestion: We need to start talking to potential presidents looking for votes now:
Has Hillary Clinton mentioned ME/CFS? I can’t find anything in a quick search. Anyone know? She is proposing a big increase in Alzheimers research which I have no problem with but should our organizations be lobbying her for us? Even a question to her on TV or at a town hall or a mention from her or better yet an endorsement of increasing funding would be very helpful. And getting her attention now while she’s looking for votes would be helpful should she be elected President. After all, we have an illness that affects many women. Anyone have contacts in Democratic Party high up? Also the other Dems?
I’d be up for finding a candidate in the Republican primary to speak up for us as well. Any suggestions? Anyone want to guess who has the best chance of being elected President?
We need to plant some public questions for candidates, lobby them for support behind the scenes and perhaps become one-issue voters when we find someone who will support us.
Great idea, but I’m having nightmares thinking of what The Donald’s response might be. 🙂 The far right and science, or women’s issues (not that it’s a women’s only issue but it is perceived that way) don’t seem to be friends.
the 20 odd billions we cost the economy with no response for decades should be an issue.
Especially since the new budget allocates $5 million for research. Very sad.
Being united is Fantastic! But the way the political process works is you get a lobbyist to work congress and the senate if you want to get anything done at the government level. This is where the first monies should go if you want true amounts of money to follow.
Wasn’t someone trying to raise money for this? I could be wrong and haven’t heard about it for a while.
I agree Gregory. Having a lobbyist is crucial…I think the best of use of money right now is not plumping $1,000,000 into a research project but into an advocacy movement that has the NIH produce a five year $10 million RFA. That’s fifty million dollars in ME/CFS researchers pockets.
I have two Facebook pages for Orange County California. Chronic fatigue syndrome of Orange County California and CFS ME of Orange County California also a international page Chronic Illness Association. This year 2015 I was able to get the city of Houston to light up City Hall with colors representing ME/CFS, FIBROMYALGIA and Gulf War Illnesses for ME/CFS Awareness Day May 12. The mayor of Anaheim issued me a Proclamation declaring May 12th ME/CFS Awareness Day. Let’s all do the same next May12.
Let’s all unite and make this May 12th the biggest and best one yet.
🙂
I think I’m confused as to what we are trying to do. As a long time sufferer of fms/Mecfs and shingles since I was 18, now 63 (oops 64 in Jan). Are we trying to raise awareness or what?? I am sorry to sound dense, but I just don’t know what we are trying to do. My doctor is fully aware and tried his best to help me and understands as much about this disease as he can.I have been on Ad I since 2000.I was first diagnosed in the late 70s when it was called fibrositis. In the mid 80s I became worse and started having problems working.From there it was a constant strugle. Finally in ’97 I gave up and only worked part time. I applied for dissability in 2000 and got it. I know there are no real treatments and a lot of “snake oil ” salesmen out there,but I feel I am getting the best treatment possible. Are we asking for more testing or more awareness? Either way I feel strides will not be made until someone famous is dissabled and headlines are talking about this.I don’t think my spending 20 days a month in bed will get us the attention we do badly need.
That is a nice sentiment and I hope to see at lease a cause found for it before I die. However, for me, my chance at a productive life is over. I have aged out of Social Security Disability and am now just on regular Social Security so even if a cure were to be found, I could not start a job in my chosen profession of Electronic Engineering & Computer Science because I am now retired before I was ever able to work a day in my life. I became ill with ME/CFS in college and was forced to take a leave of absence when I had Senior status when the college refused to understand that I was ill despite the fact that I had good grades in the classes that I had managed to finish. I was never well enough to return and applied for disability.
I have had my ups and downs over the yeas but never became what I would call well. Currently, my condition is not serious but I am not well enough to do much. Walking to the mail box tires me out and it takes a day to recover from grocery shopping.
I live in a retirement community and the Homeowners’ Associations’ reaction to my illness is to try to force me to more out. Why to people hate the disabled. They have falsely told the members that what is wrong with me is that I am seriously mentally ill and dangerous — have taught my neighbors to hate me. They have currently filed a harassment lawsuit against me. I am defending myself; I can’t afford an attorney. The Arizona Attorney General apparently will not peruse discrimination complaints based on a hostile living environment — McGary v.City of Portland 9th Circuit. I don’t know what will happen. I don’t much care anymore.
Hi James, It is so dissappointing to live alone with this disease, isn’t it. I, too, am on social security and hear what you are saying about those last hopes of the future. I am glad, tho, there is progress being made and hopefully a cause will be found with the next ten years. I know it wont really help us, but there will be some vindication with the discovery. Hang in there and try to do something special for yourself during the holidays!
I am sooo happy after Reading this article. It’s like a Christmas gift to me. Greetings from Norway! And a happy Chtistmas to all of you. <3
It is still so discouraging when I come from RI the smallest state and still can’t find a doctor who knows how to treat ME or Fibromyalgia if it’s even that? I question my diagnosis because I had whiplash and spinal problems from a car accident which caused chronic pain which caused insomnia, the pain has receded after 5 years but not the sleep disorder now I have Hypopituitarism if it’s even right because many more than one Hormone is low or nil does anyone know how to read blood work? To confusing for me. I which there was a medical advocate that we could send our medical info and see what is the biggest area of health to focus on. Seems a lot of us start with very low vitamin D before infection or car accidents, etc..and the chronic depression makes you feel helpless, especially without resources like a car? To get to all these appointments, why doesn’t every state have a multi area team?