The medical community has been aware of fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) for decades, but we have incredibly few answers. What causes these illnesses? Why do they tend to run in families? What are the underlying mechanisms and how can we correct them? Are they communicable? How can we prevent them?
We don't have definitive, widely accepted answers to a single one. We don't have diagnostic tests, and ME/CFS doesn't even have any FDA-approved drugs.
Why don't we have answers? Because we haven't had enough research. And we don't have enough research because the government funding isn't there. We are not the priority. Some people say that's because these aren't fatal diseases -- things like cancer and heart disease and Alzheimer's need the research more. That may be true. While some ME/CFS researchers have turned up good evidence of heart problems and a higher-than-normal incidence of cancer, it doesn't kill at the same rate as some other diseases.
However, an article recently published by ME/CFS Worldwide Patient Alliance shows that FMS and ME/CFS are badly underfunded even when compared to other non-fatal or rarely fatal illnesses.
According to the National Institutes of Health, ME/CFS is down for $5-million in 2011, and FMS is getting $12-million. Compare that to multiple sclerosis (MS) -- $144-million. Even Tourette syndrome research is better funded than ME/CFS.
Is that because more people have MS? Most people would probably expect so, since MS awareness is high, but that's not the case. Look at these prevalence numbers:
- Multiple Sclerosis: fewer than 500,000 people
- Chronic Fatigue Syndrome: at least 1-million people
- Fibromyalgia: at least 6-million people
So if funding accounted for prevalence, ME/CFS would get twice as much as MS, and FMS would get 12 times as much.
Meanwhile, we're left with debilitating symptoms and shattered lives. Even taking the human toll out of the equation, in doesn't make financial sense: the loss of productivity from 7-million+ people, the cost to Social Security disability, Medicare and Medicaid? Staggering.
I know, you have precious little energy to take up a fight against the government. Those of us who are able, though, need to do what we can -- with letters to elected officials, support for our advocacy groups, and donations to private research facilities that are trying to answer our questions. We need to be our own advocates and yell as loudly as we can until someone listens.
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Most of us have a difficult time just collecting our thoughts, let alone trying to get support from the very government that we pay taxes to.
We [b]desperately[/b] need a champion in the US Congress or Senate. Someone who will stand up and speak for us. Someone who cares.
Without such a person we have been condemned to suffering in silence while being ostracized by the medical community, our peers and most sadly, our families.
yes all of the above because it’s an invisible conditon! – no markings, no cough, no wheelchair, no noises except groaning, no tests, no hair loss, no body parts missing; malingerers; misdiagnosis of depression; misdiagnosis of nutritional deficiency; not enough well people to
understand and support the cause.
anyone who gets well forgets it pretty quickly and moves on, so our chance of keeping an able-bodied supporter is gone.
diseases where people die directly or lose body parts get more attention – and funding. sad fact of post-viral exhaustion #1001.
Wait – people DO die of CFS! I have lost two friends to CFS complications in my town alone.
My CFS has lead to heart failure, two heart attacks from coronary spasms induced by POTS adrenaline, 12 POTS-induced angina attacks in three months, days in an ICU – all this year alone – like an senior citizen – but I don’t have a gray hair on my head.
Maybe it’s time more of this info gets to the media. Stats like folks with CFS and heart failure (see Dr. Cheney’s work) live on average only 58.7 years.
Sadly, perhaps we may have to claim fatal illness to get any attention to our plight – endless suffering of shut-ins doesn’t seem to count for much.
SOMETHING has to help with funding.
Is this a surprise? When one in four doctors think fibromyalgia (and ME/CFS?) is bogus and we’re all malingerers…why would they put any effort into researching it? You know the politics of it.
Until there is something that can prove fibromyalgia (or “level of fibromyalgianess” according to Dr. Wolfe) or show it’s cause there won’t be any funding for research. And of course there is no way to “prove” fibromyalgia without research. It’s a vicious circle.
How to change this? How to get change the medical profession’s and politician’s opinion on these disorders?
Just making them aware of it isn’t enough. They are aware and they have their opinions.
Find an answer to this and then we can make a difference!
I would like to know what steps to take to push the information in this article to those with the power to send more money to research our cause. How can we do fund raising ourselves and how to get that money into the hands of trustworthy researchers ? As a person with fibromyalgia, I know the devastation of this illness first hand. If the sufferers do not speak up, do not push, do not fight for funding or fund raise themselves, I doubt there will be much concern at all. How can I help? Where do I start?
Thanks for this, and the link to the budget comparisons. Funding is key to sorting out ME/CFS. 70 million dollars seems reasonable. Additionally, they maybe should be giving retroactive funding for all those years of underfunding.
Equal funding for equal disease disability. It’s fair.
So well stated:
“Meanwhile, we’re left with debilitating symptoms and shattered lives. Even taking the human toll out of the equation, in doesn’t make financial sense: the loss of productivity from 7-million+ people, the cost to Social Security disability, Medicare and Medicaid? Staggering.”
My osteopathic physician was telling me that there has been a lot more research recently and that a breakthrough is imminent, but I am skeptical. Part of the impetus for research has to come from doctors themselves. When a university department did a recent study of people with chronic pain, I applied and was eliminated at once because I had fibromyalgia. That was discouraging! What can we do except voice the misery that this condition causes?
I have gone from a energetic ,active person to a pathetic shell. No obvious marker’s on the outside and a painful existance on the inside. CFS/FM is like a living death. I was part of the RI chapter. Meeting’s at the health dept., medical conferance in Newport, and answering call’s on our hotline. It was exhausting, but I felt that it was worth it because I was under the assumption that answer’s would be found. That was in 1989!!! CFS/ME/FM is devistating to those who suffer from them and all the family member’s that have to try to deal with us. The number’s are growing while answer’s are non-existant!!! We Need Answer’s!!!
I just wrote a long list of ideas, then hit the wrong key and away it went —- into the black hole of emails that can never be read. Sigh.
We need publicity. We need a Hollywood star or a well-known author to act as our spokesperson. Someone in the House or Senate would work. Find an advertising person to show us how to have a’single voice’ — someone memorable. Take the ’spoon’ story and make a advertisement (I think we could do any publicity like that as we are a not-for-profit). For those of you who aren’t familiar with the piece, you can find it at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino
/ Sorry for the long URL — I can’t find the application to shorten it.
I use that with my son and it works very well. All I have to tell him when I am REALLY tired is — I’ve one spoon left……
Sorry for the length — I got carried away. Also, I had to write it down before I forgot it.
I agree with Deb 100%.
Every Major Disease has a person who we all recognize to add their voice and face to their Illness of choice.
I find it hard to believe with all the actresses, actors,authors and politicians in the USA that not one of them have had their lives touched by FMS and/or ME/CFS. Instead they accept depression as their diagnosis and take pain pills prescribed by “Their Dr’s” who don’t give a flip to help them get well.
To Mark,
We can not all give $10.00 a month. Many of us, like me, do not have health ins due to the fact we can not work. My husband lost his job due to the “recession” and now works a part time job that doesn’t cover the monthly bills. These are the people who you have no way of counting in your equation.
Thank you Adrienne so much for reporting the the horrid state of underfunding. I have been working with the MCWPA since October and am so impressed with the movement. We are not an org per se, just a group of patients trying to create change for our disease. Together we can make a difference!
Please add the ME/CFS Worldwide Patient Alliance, http://www.mcwpa.org to your list of advocacy links. Thank you!
Thank you for covering this topic. As you know, this is the story that needs to be told. 25 years of government neglect and more and more get sick. Now we see an infectious HIV-like retrovirus is spreading unchecked and has shown up in the blood supply. They do not listen to the patients or the physicians who treat them.
well done Adrienne. Thanks for pointing out the discrepancies that dog not just CFS and FM but IBS, Interstitial cytisus, pelvic inflammatory disorder and other mysterious female dominated disorder. All are very prevalent and are all at the bottom of the heap at the NIH
I would like to add that I disagree with some of your statements above. 1) If you have the viral subset (65-75% of all CFS cases) then you are infectious; thus communicable. 2) Estimates say 1-4 million Americans have this disease: but a leading CFS scientists recently quoted that # as high as 20 million in the U.S. Alone. 3) There ARE diagnostic tests for the viral subset and there is treatment for this subset (anti-virals) 4) There is a test for XMRV and there are major centers providing anti-retrovirals already. 5) The NIH, CDC, DOD and 7-8 Private Philanthropic arms have given nearly 30+ million dollars towards research to create a vaccine for these such viruses. However; funding for research for treatment is still 1000% below par.
Adrienne, thank you for your dedication to this site and cause. I believe we have it within ourselves to find solutions if we can manage to generate a comprehensive list of all our suspicions, all our symptoms and possible causes for a unified study. There may be multiple root causes to our illness which confounds those who cannot feel our pain. Many of the symntoms seem the same, or overlap. We need to work on a comprehension questionaire that protects our privacy and allows us to answer personal questions with amonimity. With the right questions and a large statistical base, I think patterns will emerge that are still undiscovered. Sufferors need to be able to add questions that they may suspect may be a cause in their case and let the responses bear out if there is a common thread and to what extent. We need to lead this using the internet and provide the facts to researchers in a scientific way.
The answer is actually simple. If everyone with CFS/ME donated $2.50 a week to a proper research institute like the WPI we’d have a cure in no time.
$2.50 a week = $10 a month = $120 a year
and with 1 million people ill that gives
$120,000,000
for research every year. Problem solved.
All we need to do is pay that tiny amount each week and that’s what is not happening.
I think this is a great idea if everyone would get on board!!!!
Thank you for writing about this important subject. Maybe you could help us out by providing really clear and simple directions for where to send our letters, what to write, and so on. For many of us just thinking through these “simple” steps becomes an enormous challenge.
@ Mark – I’m donating my $10/month to WPI. I really hope others will consider doing the same.
Hi Nicola, the MCWPA just had a fax campaign to congress. We hope to do it monthly and include ways for patients overseas to participate as well. Here is the link we used last month.
http://mcwpa.org/2011/01/fax-em-campaign/
click on the word site for details.
Money is great, if we can actually get enough to the WPI to make a difference. Im working on a demonstration in front of the CDC with at least 20 people in the near future. Anyone near enough to Atlanta and able enough to hold a sign for roughly 4 hours, contact me at jh0867@sccoast.net
To C Little’s comment that people do die from CFS. I’ve specifically addressed my Son to insure that should I go at any time when I’m dealing with this debilitating disease – over a decade now – that my death certificate read “cause of death” to be CFS.
It’s been so long since I’ve commented on these post and I’ve always meant to as it seems there is a community of both those knowledgeable or the disease and those just beginning their journey. I do have all your emails in a separate folder hoping to get to them all one day.
I once told a friend of mine my daily routine and he retorted that I must be the most bored person in the world. I thought about that for a few seconds – because the word “bored” has never occurred to me. then I replied and told him in the past 12 years I’ve never – not once – felt bored.
I’ve always felt there was too much to do as well as too much I wanted to do. Bored? No way! Adrienne – Iknow it’s been awhile since commenting but I would like to thank you once again for keeping this fight going. It seems your readership has grown from the days when I first started becoming attracted to your informative articles. It’s grown because of the relevant information you provide in an easy to understand format.
Keep up the good work – and hopefully I’ll contribute more to your site. Believe me after a decade of searching for answers added to the joy I get from writing – I should have some insights that may be useful to others. Now if I can only get out of this “bored” lifestyle I lead I’ll find time. Haha!
My brain is severely effected, but I’ve been trying to determine the best place to leave my body for research (and how to go about it). Sorry if this sounds morbid, but I’d really hate for this probable bonanza of knowledge to go to waste. It does rule out suicide, because you can’t do anything that might muddy the waters.
I can’t contribute money I don’t have, and rarely have the energy to do much in the way of speaking out, but this is something potentially really helpful I could do. Naturally I’d rather it wasn’t needed, but as of right now, it really is, and I’d like to have arrangements in place in case of accident. So if anyone knows where to contact, I’d really love to have that sense of accomplishment I so desperately miss from my former life…
Yes, it is a disgrace the lack of funding ME gets. Thanks for noting that ME is sometimes fatal; however, you state that it is rarely fatal, but I wouldn’t say that. One can say we don’t know how fatal it is exactly because studies have not been funded or that it usually isn’t fatal or is rarely fatal in the short-term.
Thanks to MCWPA and Pat Fero for reporting on this important issue.
Also, can you PLEASE change the name of your ME section to something, anything other than “Chronic Fatigue.” Seriously! We all know the use of “chronic fatigue” very substantially harms ME patients. I have brought this to your attention before as I am sure many others have.
From Your Guide: ME isn’t a common term in the U.S. While some people have chosen to use it and there’s been a movement the last few years to use ME/CFS, ME still is not a recognized diagnosis by the American medical community. Most people searching for information on this illness look for chronic fatigue or chronic fatigue syndrome, so that’s what About.com has decided to use on the site. It’s not a perfect solution, I know, but until everyone is using the same name, I have to settle for “chronic fatigue syndrome” when it’s written out, and ME/CFS when it’s abbreviated. ~Adrienne
The CDC’s latest estimate of economic costs due to CFS is up to $51 billion annually in the USA.
http://www.ncbi.nlm.nih.gov/pubmed/21251294
If you compare the funding ratios of NIH funding to other diseases, you will realise that funding should be increased to 100-250 million per year to be equitable.
Prognosis is poor, with only one in ten having a full recovery, according to a meta-review.
http://occmed.oxfordjournals.org/content/55/1/20.short
Yet the only treatments that are pushed by the medical establishment don’t actually work very well, since most patients remain housebound and unable to work.
The mean level of SF-36 physical functioning after GET/CBT was similar that to the mean level of 75-84 year olds (including the aged who have long term health conditions).
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext
The largest CBT study/audit to date found that at the conclusion of treatment/followups, the amount of hours worked went down and activity levels did not improve!
http://www.inami.fgov.be/care/fr/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf
http://www.kce.fgov.be/Download.aspx?ID=1222
Since there are huge economic costs, poor prognosis and lack of efficacious treatments, a large increase in research funding is essential.
ME is not CFS is not ME/CFS. ME/CFS is a made up term with different meanings and interpretations so ME/CFS research is useless. CFS research will never help those with ME. Leave our illness out of it.