The cause of chronic fatigue syndrome’s decades long funding problems have prompted much speculation and finger-pointing. If only the CDC had taken the Incline Village outbreak seriously, or if Stephen Strauss had never showed up at the NIH, or if Bill Reeves hadn’t take over the CDC or if Fauci, for god sakes, hadn’t lead the NIAID for the last couple decades – then things would be different. If only we’d had a good definition, an FDA approved drug, or top researchers then things would have changed. Then we would be doing well.
I assert that the crucial problem ME/CFS and FM faces is rarely addressed
I submit that these are all symptoms of the problem – not the problem. I assert that even if we had a better name, better leaders at the federal level, FDA approved drugs, better researchers, etc. we would still be facing a low funding ceiling – perhaps not as low – but still too low. I suggest that absent fixing a crucial problem, ME/CFS and FM have, from the beginning been essentially doomed to poor funding.
First let’s look at some of the proposed causes for chronic fatigue syndrome’s funding problem.
The Lousy Name
Chronic fatigue syndrome is a horrible name to give to such a debilitating disorder. In fact it’s easily the worst name of the 244 diseases and conditions that are tracked by NIH. No other disease name is even close. A look at the other disorders that get poor funding indicates, however, that a good name is not a guarantee of good funding. fibromyalgia, interstitial cystitis and migraine, after all, all have “good names” yet all get lousy funding.
Per person fibromyalgia actually receives significantly worse funding than ME/CFS. If you throw the ME/CFS funding from the CDC into the pot (FM receives no funding from the CDC), ME/CFS gets about nine times as much more funding per person from the federal government than fibromyalgia does – and it’s got a lousy name.
The name has hurt will help but getting a better name for chronic fatigue syndrome is no guarantee of better funding.
The Poor Definition
A rather vague definition (Fukuda) that allows some people who do not have ME/CFS into research studies has undoubtedly impaired research efforts – and ultimately funding. A better definition should allow studies to produce better results and that will help, but it’s not the main reason for ME/CFS and FM’s funding problems.
Why do even good researchers have so much trouble getting grants?
The fact is that success does not necessarily breed success in ME/CFS. Natural killer cell dysfunction, metabolic dysfunction during exercise and autonomic nervous system problems have all been consistently found in ME/CFS yet have received paltry funding relative to hot topics in other disorders. Neurological research studies suggesting poor motor activation in the brain, altered pathway activity, and others have never or only shoddily been followed up on. The startling Rituximab results made no difference in the U.S.
Similarly, the many, many abnormal brain findings in fibromyalgia have not lead to an increased funding for it.
The definition and its effects on the research are a problem but they’re not the problem. In fact, I assert that if we’d fixed our crucial problem we would have had a good definition years ago. The fact that we’ve had to live with a poor definition for many years is simply a symptom of the bigger problem.
The Lack of Top Researchers and The Few Grant Proposals
The NIH has asserted for years that if they would only get good grant proposals from good researchers they would fund them. Let’s be clear – the NIH is not being flooded with good ME/CFS research grant proposals – and that’s a problem. But even renowned researchers such as Ian Lipkin and Ron Davis have gotten their grant proposals rejected (twice). It turns out that big name researchers writing good proposals face many of the same issues others have faced. Better researchers will probably be more successful, but they are no guarantee of significantly better funding.
The NIH has known for decades that low rates of grant proposals are a major problem. It knows that even a small Request for Applications (RFA) grant for ME/CFS would receive many grant proposals (a similar RFA ten years ago did.) yet it does nothing. Why it does nothing when an obvious and not particularly expensive solution is in sight is the real issue. The fact that it hasn’t is simply indicative of the crucial problem we have not surmounted.
No FDA Approved Drugs
Advocates often assert that getting a drug approved for ME/CFS will help legitimize the disease and result in increased funding. Having an approved drug may very well result in increased funding and would certainly help legitimize the disease, but will almost certainly not of itself lead to the kind of funding breakthrough ME/CFS patients wish for. Why do we know that? Because fibromyalgia has three FDA approved drugs and migraine has seven and both still get poor funding.
Getting an FDA approved drug would be great and could lead to increased funding but it will not lead to the breakthrough in funding that we wish for.
The Broken Funding Mechanism
It’s true that the infrastructure problems alone almost completely prevent ME/CFS from getting sufficient funding. Funding for ME/CFS can come in three ways
- the Institutes in the Trans NIH Working Group can band together to fund a disease none of them has responsibility for.
- the small Office for Research on Women’s Health (ORWH) can provide funding out of its meager budget.
- the Office of the Director can step in and providing funding.
I assert the problem is bigger than ME/CFS, that we are not alone.
Over the past fifteen years only one of those potential sources of funding – the smallest one – the ORWH, has provided any funding for ME/CFS.
The proposed solution to the infrastructure problem is to have an Institute take ME/CFS under its wing. But fibromyalgia, migraine and interstitial cystitis are all under an Institute’s wing – and all still get poor funding.
Getting into an Institute is probably a necessity for ME/CFS, but it is no guarantee of dramatically increased funding.
Conclusions
The underpowered name, the vague definition, the broken funding mechanism, the lack of FDA approved drugs, the inconsistent study results, the unfortunate leaders, the lack of major researchers…they’ve all contributed to the funding problems in ME/CFS, but I assert they are all symptoms of the problem, not the cause. I assert that, absent fixing our crucial problem, that even solid advocates at top positions in the federal government would have had trouble getting us far.
Why do I think that? For one, because migraine has a good name, it’s centered in the right Institute, it has several drugs approved for it, it’s well-defined, pathophysiological disorder that has good researchers associated with it and it still gets lousy funding.
Something deeper is going on – the fixing of which is critical – and which would clear the way for abundant funding. Not fixing this issue, on the other hand, will guarantee that, whatever increases in funding occur, ME/CFS will probably keep on in its petty funding pace. It will always, like migraine, have a low funding ceiling relative to other major disorders.
I think the three main reasons that CFS/ME is so underfunded is that
– it affects more women than men (migraines as well affect 3 times more women than men)
– once we are ill the severity of our illness usually means neither we nor our caretakers have much chance to work and make money
– it’s not deadly nor commutable
All that translates into that we don’t have power and we don’t pose dangers to others, so why would anyone care.
*communicable, not commutable
Those three things are all true of MS but we all know how much more funding MS gets (even though it affects fewer people)
MS kills people early (ME might as well, but it’s certanily not recognized as such), and it’s progressive. A lot of people with MS have a few years of strength in them to fight the system after the diagnosis.
MS got a celebrity spokesperson or 2, then more. That’s one huge difference. Someone famous got it and people ‘had’ to notice and care. And once that celebrity got it they ended up fundraising and raising awareness. We don’t have that.
I am convinced you hit the nail on the head, Telula. Check out the documentary The Battle of Amfar to see what Elizabeth Taylor did for HIV/AIDS, after she was motivated to help her famous HIV-positive friend. http://www.hbo.com/documentaries/the-battle-of-amfar
I’ll add to my comment, that Elizabeth Taylor’s work with Amfar created a lot of momentum for the HIV/AIDS community to work together…….which we need to do as an ME/CFS community.
so we have the stigma of aids, the unfindableness of (what causes) MS and the glass ceiling of being mostly girls
I don’t see the problem ;D
very good points Tally
You have one of the reasons I think it is underfunded. The MS reference provides another clue…But that’s for the next blog 🙂
Cort, when are you going to tell us your reasons? I’m impatient ?
Spot on, in my opinion, Tally.
Are there any thoughts as to what this “something deeper” is; without identifying what it could be the critically needed remedy to clear the way for the necessary funding will stay unaddressed.
This is admittedly a kind of teaser blog (sorry about that :)…The next blog will use the NIH bottom 40 to demonstrate identify what the reason is…and make it more concrete than just stating it.
The real reason for lack of funding? Two words: Conspiracy Theory.
I’m not kidding!
Yep I agree this article never answered it’s own question. Call I a teaser blog if you want but people who are as sick as we are would appreciate you completing one blog without manipulating us into having to read another.
Got it!
I don’t think it was manipulative in the least. All good writing is persuasive!
Excellent literary device, Cort. Gets all of us to fine-tune the thoughts we’ve all had on this subject since the moment we all realized the terrible situation we are in with this disease.
I concur with Rebecca here. You have falsely titled your post given that you provide no reason — and do so intentionally! Perhaps with a different title you could argue it’s a teaser post (not sure I’d go so far as “literary device”), but as a former journo friend of mine says, you never ask a question in a headline you don’t answer in your article — and answer usually within the first par.
I think the reason for the NIH not taking CFS seriously is the lack of desire to search for cures until an illness becomes a “national emergency” such as polio was decades ago.
Yes, we also need a vocal Hollywood type spokesperson as well.
Between tick disease prevention and the as yet undocumented viruses floating around, the U.S. is really behind. We are financially profit driven not cure driven.
I find using the U.K. public health website is much more informative and not “dumbed down” as is the CDC website.
Or there could be so little funding because the cause of CFS/ME is human created poisons and acknowledgment of that would be very inconvenient for profits
i am thinking because like fibromyalgia, CFS/ME are conditions that have so many variables that can affect the underlying causes…long process of process of elimination; but it seems like there has been more research than ever before for fibro….cfs/me….thankful for that
Tally I agree…but Im confused by this post – absent fixing…something deeper…All sounds a bit mysterious…
I think Mr. Cort Johnson will reveal the mystery to us soon 🙂
It’s actually really, really simple. The sensory mechanisms by which we (human beings) relate to someone else’s suffering are not picking up on these truly misery-laden experiences. This statement is definitely vague, but i’ll deep a little bit deeper. (As already mentioned in this publishing) Names actually do some justice, e.g. “Cancer”, or “AIDS”.
Next, Visuals regarding of the person will elicit different responses, e.g. someone that looks like they are “dying” vs. “tired”, or blood coming out of our eyeballs, or the idea of rocks traveling through our urethra, or he SEEING someone who is 6’5″, and only weighting 100lbs.
Lastly, human experience of the underlying symptoms/conditions. No “Spock mind-meld”, no ability to convey the real problem. Telling someone “the cognitive dysfunction is like the straining feeling you get when you bow out of a starring contest…” can only do so much, especially when the average person’s experience with the related anecdote is typically only temporary and easily revolvable.
Good points Albert – thanks! I think the sensory aspect is important.
I think a major problem is that CFS/ME is thought of as a “womens’ disease”.
There are many examples of medical research being subjected to politics and biases.
Here’s one on pellagra:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2589605/pdf/yjbm00051-0058.pdf
(The pellagra example is great- it was thought to be an infectious illness, and then it turned out to be a vitamin.)
Also, if you watched the PBS cancer documentary, based on the book “Cancer: the Emperor of All Maladies,” you would see the same attitudes towards cancer in the early days.
So, what do we do? We get organized. We fundraise. We share our stories. We fund pilot research by ourselves. We attract thinkers and solvers. We keep moving forward. NIH is not going to fund this properly until we (and our loved ones) get rowdy.
Thanks Laurel
IMHO I think the 2 main reasons are CFS is not considered a terminal illness and it is seen to mainly affect women. If it were a terminal illness with definite start and stop markers, then it would be seen as more important because the treatment would be noticeable to all, death would be put off or avoided. The other issue, seen as affecting mainly women, is that until women are more valued in society, financially and socially, the loss of a woman is negligible and therefore easily replaced with a minimum of fuss and financial cost. Of course a mother or a sister is incredibly important to a family but not recognized as part of the financial engine that runs the country. Easily replaceable like slave labour in the past. Why spend money on something that is inconsequential and can be replaced with a better model.
Lack of mortality and gender and two of the factors I came up with as well.
I’m not sure it has been established that CFS is not terminal. Or not contafpgious for that matter. Montoya at Stanford seems to think it may be contagious, from mother to child for example or close family.
And there is at least paper describing a very small and admittedly informal review of cause of death what people on one ME forum. Apparently the top 3 causes of death were of cancer, heart failure, and suicide, and approximately 25 years earlier than the general population. So average age of death by cancer with an ME diagnosis was something like 47 versus in the 70s for everyone else. Death by heart failure was in the 50s. Suicide in the late 30s vs late 70s. The problem is, they don’t put CFS as cause if death, they put cancer, heart failure, suicide, etc. I think this was a similar issue in the early years of AIDS. Maybe we need to find out how to change that.
I’m not sure it has been established that CFS is not terminal. Or not contagious for that matter. Montoya at Stanford seems to think it may be contagious, from mother to child for example or close family.
And there is at least paper describing a very small and admittedly informal review of cause of death what people on one ME forum. Apparently the top 3 causes of death were of cancer, heart failure, and suicide, and approximately 25 years earlier than the general population. So average age of death by cancer with an ME diagnosis was something like 47 versus in the 70s for everyone else. Death by heart failure was in the 50s. Suicide in the late 30s vs late 70s. The problem is, they don’t put CFS as cause if death, they put cancer, heart failure, suicide, etc. I think this was a similar issue in the early years of AIDS. Maybe we need to find out how to change that.
Cort, Is there a possibility in starting a national ME society? I think the me/cfs community neefs to re-group and join forces. The mecfs organizations fail to unite and keep working independantly. I think we would get farther if we spoke as one voice.
Agreed. I know there are discussions in that area. I hope it happens! A strong advocacy organization is needed…
Cort, Is there a possibility in starting a National ME Society? I think the me/cfs community needs to re-group and join forces. The mecfs organizations fail to unite and keep working independantly. I think we would get farther if we spoke as one voice.
I like Heidi’s idea. How do we do that? (And I think the answer to that question is what Cort is leading up to.)
I still think that it’s because there are still so many people who think that it’s a psychological problem or that people who have it are just lazy. Most of us are not wheelchair bound, yet.
When I was fifteen, the doctor told me that there ‘ was no such thing’ as this disease. I still think there are many in the medical community who don’t think that it’s a ‘real disorder.’
I’m thinking that’s a great idea to band all (or as many as possible) groups together to make our voices heard! I think being predominantly a woman’s “problem” is part of the problem w/funding.
Cory, I just found you and joined your blog yesterday. Now I know why I’m not getting much help coping with this disorder/disease-don’t even know what it is, just that it’s ruining my life. Thank you for your ideas and blog.
Thanks Mary Ann. Might want to check out the Forums as well. Good luck with your searc!
Cort, I await your reason with baited breath. And I’d be willing to bet that it’ll be a good one. M
We’ll see!
Not being a quickly fatal disease, I agree, is the biggest issue. But we also have so many symptoms that are not signs, and got caught up with a moment in medicine, mind-body connections and the need for psychiatry to keep its hold on its place among medical specialties.
We have famous people get the disease. That helps me, but I am never sure it makes a mark on the medical community as a whole. Many famous people would still rather keep it quiet. The name reflects the insult intended by the medicos, I think. The new group at IOM, they do not mean to insult, they mean to have success.
I have to say, when the work clearly measuring the perverse reaction to exercise, using totally standard tests, did not produce that, Duh oh now I see it moment in the medical community — instead Staci Stevens was let go from the university, really knocked the wind out of my sails, what sails I have left.
But I am glad you are taking the positive approach, Cort. It is far better than to rehash the inexplicable reactions of the medical community, even when the first studies of the disease in the last thirty years were on nurses who go the disease, ooops there I go again. 😉
Sarah
A big problem for us is that the reactions of the medical seem inexplicable. We would go a long way to undersstanding and ultimately solving the problem if we could get inside the naysayers heads and see how their reactions – to them – made sense.
The answer is: ADVOCACY!
This explains the mysterious nature of the post… The idea is to stir interest and ACTION 🙂
To what I think the problem is – advocacy is probably the only cure. A major research finding that blew everyone’s minds would help but those are few and few and far between and some people will still find ways to shoehorn ME/CFS back into it’s box at least to some extent. It would help – no doubt about it – but the crucial fix is probably something to do with advocacy.
Cort,
You obviously want to get some action stirred up by posing a problem and leaving us with a cliff hanger. Okay, I’ll bite. I think Tally may have a point: the gender issue. But that certainly doesn’t apply to all, and many vocal sufferers are male. I think there may be a major issue because at least Fibromyalgia, MECFS, and interstitial cystitis are seen as issues that are co-morbid with, if not intrinsically related to, psychological “dysfunction.” Particularly, the fact that these diseases have a close relationship (and I’d suggest it’s a chicken and the egg situation) with depression, exhaustion, sensitivity, and what Donna Jackson Nakazawa brings to light in her discussion of the orchid hypothesis or the sensitivity hypothesis in The Last Best Cure which delegates them in the eyes of many as being too close for comfort to malingering. And they are not taken seriously. That’s why some in-the test-tube, grown-in-the-Petri-dish, biological connection has to be found before they are taken seriously. It needs to be recognizable, nameable, and, as Tally said, scary. It needs to boil down to a single thread, something that can be discussed by lay-people, and something that can’t be attributed to any laziness or navel-gazing in the sufferer. FM and MECFS are just too complicated, and their symptoms of fatigue and unverifiable pain undermine them. If you have a complicated name, a plot that bears synopsis, and an obvious, scary, immediate threat to all mankind, you might get somewhere. Until we find the H-pylori of our condition, it’s going to be written off to stress, bad parenting, and psychological malfunction.
Actually I think the gender issue does affect the males in our populations as it affects females. Just like breast-cancer in males was seen as weak and girly for a time, a man having ME/CFS is also seen as weak or just as faking as the rest of us millions of women in America and millions more around the world who have ME/CFS.
And there’s still rampant both subtle (not said or sometimes even thought outright) and unsubtle sexism going on in the world and the medical community.
Agreed. Once the gestalt of the illness is set – it will affect men as well.
I think this – some in-the test-tube, grown-in-the-Petri-dish, biological connection has to be found before they are taken seriously – would be helpful but even then (this is pretty rough) there’s no guarantee that funding will increased dramatically. In fact I would bet it would increase but not by that much because I don’t think it will take care of the problem.
Fibromyalgia has biological connections and so does migraine – and both receive lousy funding.
Why would anyone care? A lot of people DO care. I care.
But overall, ME/CFS is not very visible so we need to all make it more visible so recognized by the average person, as much as highly funded HIV/AIDS is recognized.
I have bumper sticker on my car, to strive to raise awareness and can send two to anyone sending me their address, and I have no other reason for this address.
My 100 each stickers at moment say, since they must be short and catch your eye in traffic:
Can U Say M.E.?
Myalgic Encephalomyelitis!
CFSresearchcenter.org
Send me your address to mcamenzind@comcast.net, if in USA, and I will send, until I run out of 100 each, then might send something better. I will pay postage, envelope, 2 sticker through August, if you commit to placing on both bumpers to maximize coverage.
I am sure we could come up with a better idea and you can print your own, or get hats, lapel buttons, anything to help educate, start the conversation, and get more funds from corporate or private donors, since we cannot afford to wait and hope for NIH/CDC to come around. I will still hope, but not wait.
If anyone has a better idea for a bumper sticker, please propose this, such as using the new short weblink to get you to openmedicinefpoundation.org, that Linda T created, End-MECFS.org is the new shorter link. Thus, for example need your feedback on whether you think which is better:
A)
Cure M.E.!
End-MECFS.org
or
B)
Unbroken! Cure M.E.!
Myalgic Encephalomyelitis
End-MECFS.org
C)
Your better ideas are welcome!
We are also striving to inquire with known philanthropists and corporations, for funding, and many companies have matching programs to leverage your donations
With help from all the CFS groups, we can cure this, and must cure this, and will take time, so let’s try to get more aggressive now. Luckily, I do not have ME-CFS, but know people who do. I totally appreciate those that are affected may not have the energy, and hope their friends and relatives can help on their behalf.
I keep putting it out there…we can create an app that can be sold to raise funds for research…and another app that is for research, that is self collating, needs a fraction of the time and energy required to do the research and the demographic group …can be the online world. Just need help getting to speak to the right contacts and decision makers. There is no reason why we cannot do a research app like we did for myLDN and is the largest remote research study in the world.
Our FibroMapp App can be used with a few tweaks, and sold to raise funds. Where there is the will there is a way. We have the will…
Alyssa
It suits the medical insurance industry to have these illnesses defined as psychological because it costs them less.
For similar reasons, it suits corporations to have sick employees labelled as basket cases
Agreed….but unless the insurance companies are telling the NIH what to do and I don’t think they’re capable of doing that – it’s a problem but not the answer.
When celebrities get the disease, or when people “recover”, we never are told what they did to recover. Plus, we are too sick to really raise much fuss except online. I don’t think the name is that bad. It sure beats SEID. Also each of the researchers are concentrating on their personal opinion instead of working together. There are common elements despite the different presentation of the disease: high antibody counts to viruses most people have and low immune function. Plus I believe mold is a factor. Whether it began with a mold exposure or there was mold present when the flu or whatever started the disease.
IMO and overall, those that recovered did not have ME/CFS or Fibromyalgia. Now, I know some have and believe them like Morgan Fairchild. However, I don’t think she FULLY recovered from ME/CFS. Whenever I see people that recovered, I think to myself, I BET you could never endure a workout or pace of another healthy individual your age.
Sometimes in the youtube videos, those that have recovered from Fibro or ME/CFS seem to still be weak and have that dullness of the eyes and facial expressions. They are at 90%.
The others that have claimed to have ME/CFS and “recovered” probably had CF. Resolve the real health issue and you resolve CF because it was a symptom of the real issue. (Low D, Thyroid, etc.)
Same with Fibro, a lot of people were diagnosed with Fibro and never had it because they had Low D, Thyroid, etc.
That is how these illnesses/diseases became wastebasket diagnoses. Lazy doctors and alternative practitioners wanting to “cure” their patients knowing that there other illnesses were causing their pain and fatigue and just plain lousy and lazy doctors.
Excellent article and I am enjoying the many posts. Looking forward to your follow up blog on this.
I don’t have low D or thyroid issues. I do have high viral antibodies and low immune system, as well as many allergies.
I don’t think the problem is necessarily due to gender bias. Gulf War Syndrome has many the same symptoms and is predominately male, yet not taken seriously. By the way, I have some concerns to see gws research needs mixed in with the most recent icc criteria. The last thing we need is to have our limited funds used to work on another underfunded disease. Dr klimas is now working on gws at nova southwestern. Many of the drs and researchers have done a great job researching the cause of mecfs, but when they get too involved in the political and funding area, it becomes a battleground amongst their own competing interests. Everyone should ask themselves why gws shows up in the dr driven icc and now as part of the cfs research at nova southwestern. I have nothing agsinst Dr kilmas, but she added gws to the icc and now doing reseach on
it. We must become our own advocates and protect what little funding we have.
I was going to say the unfortunate issue for many of us is that we can look healthy, then I remembered how I looked 2 years ago when I dropped weight to 85 lbs!! Sure didn’t look healthy then, but I’ve since regained my weight due to a change of diet. I had leaky gut syndrome.
Many people with cancer, especially if they’re going through chemo or radiation look terribly ill. In the past those with HIV/AIDS looked horrific with Kaposi sarcoma and weight loss and thousands were dying all over the world. People were frightened of this disease and it made them angry (fear=anger). Researchers were probably stumbling over themselves to be the one with the cure.
Cancer is scary. Although mortality has lowered with many cancers now-a-days the first thought that goes through peoples minds when hearing a cancer diagnosis or possible diagnosis is fear. Fear of dying, fear of pain.
By the time most of us are diagnosed we’ve already lived with pain and exhaustion for over a decade. Any diagnosis is actually a relief. Thank God there really is something wrong with me and it’s not all in my head.
35 years ago when I was a newbie RN, I remember anyone with a diagnosis of MS would suffer greatly and die too young. It took years and years for MS to be deciphered and sub-categories were discovered. But people were dying from MS. People with ME do not have a death sentence hanging over their heads-although it may certainly feel that way a lot of the time. (No one has yet said that ME shortens ones life span, although cardiac issues may be present).
How do we bring our disease to light? I gave my family doctor and her replacements research papers on ME and try to keep them informed that way. I explain ME to my dentist, the pharmacist, my neighbours etc. I wrote a brief synopsis to one of our contenders for Prime Minister. I’m sending out letters to fund raisers in business and anyone else I can think of. No response.
But perhaps if more of us could do something like sending out letters or putting on ME bumper stickers (as mentioned above) getting info out to those that may matter. It’s like finding a needle in the hay stack, there must be some contact out there that will make the difference, that will be the leader, who will coalesce researchers and ME organizations, who will give us hope.
Thanks to the researchers and people like Cort, for their dedicated work in exposing ME and attempting to find its etiology and treatment.
Our day will come (is that a song?). It will, I must believe it will. Without hope I don’t have much to go on.
I’m in terrible pain today. Suffering sucks.
I think it’s underfunded for the following reasons:
– the name problem
-the nature of the illness makes it hard for many patients to be seen and heard
-the fact that it does not appear to be communicable disease
In today’s paranoid political climate if this was a infectious disease it would be getting heavy funding in both the NIH and the military, just look at Ebola and HIV. The disparity of funding levels needs to be addressed, possibly teaming up with other underserved illness’s in a social media blitz. We have some awesome young minds thinking big and I like what I’ve been seeing lately. Go Ryan and Jen !
Here’s my take – the fact that it is not communicable – is getting close to the mark….
I wish we could be more vocal about the fact it isn’t communicable. I think people avoid me like the plague.
I hear you, Sue! Of course, everybody knows they can’t catch FM/ME/CFS from a patient. So why do people avoid us? Many reasons, I think. 1st, if they’re healthy, their lives are full. We get left on the sidelines. Most of the time they’re not being mean or selfish. Most of the time! 2nd, some of my family know if they’re with me I’m going to delegate chores! 3rd, some judge me because for a while I got trapped in a life where I took on too many responsibilities. That made my illness worse. They thought of me as foolish and selfish. They have absolutely no comprehension of what I’m going through, so they see me as a drama queen and see my illness as my own fault and nobody else’s. They forget the active life I had before, the high-risk sports I was in and my very high tolerance for pain and discomfort. 4th, those who are caring will do all they can. But it’s difficult to help a chronically ill person consistently when you’re not in the same house. 5th, the rest probably just feel sad and helpless. They get stuck in “Aid Paralysis” by the level of our needs. They forget that just keeping in touch, letting us know they’re thinking of us, or just stopping by every now and then with flowers or a meal or sending a card could really brighten our day, even if it’s just once every few months! They feel really bad about not being consistently helpful, so they end up doing nothing. They really just don’t know what to do. And maybe they’re afraid to ask, I don’t know. I think most people just get wrapped up in their own lives.
Actually, I have been asked if I was contagious.
That’s so sad. I’m so sorry.
Most experts think that because it occurs in outbreaks it IS communicable. But the government failed to take any action when they were called in. Why? It is well known that germ warfare research was underway at that time……interesting that you never hear it mentioned in the news anymore. Was a big scary threat in the 70s and 80s…….why the silence? Thus, conspiracy theory. But all of that is fact.
Katherine,
After 17 years of indepth reading, thinking, running support group, I also began to think that people in certain circles know much more than is being revealed. Yes, there was extensive experimentation with EBV in the 60s and 70s. They were hoping to use this virus in gene transfer. And biowarfare????
Is everyone familiar with the William Thompson Whistleblower /autism situation? How could we ever trust the CDC after the details of this case? Ha! And the organization that became the CDC was the one responsible for the Tuskegee experiment.
I would not be surprised is someone at the CDC used the Incline Village blood samples to figure out exactly what did happen there. We need a Whistleblower.
Hi Merida,
I am not familiar with the whistleblower study, I will study up.
I have seen a comment from a researcher somewhere that certain pathogen associated with CFS looked as if it had been modified in a lab. I’ll try to find the source.
I got to wondering why the government/medical community continue to ignore this serious disease, continue to waste time and money renaming it (twice) when it’s had a legitimate name since 1969, continue to set vague criteria causing people with all kinds of other illnesses to be folded in to research studies, leading to persistently inconclusive findings…..it’s hard to be this incompetent. There are too many deliberate actions – like redefining the World Heath Organization’s code 93.3, ME, a neurological disease, as a vague “fatigue syndrome”. It feels like they don’t want the cause of this disease, or anything else about it, to be discovered.
Why? I got to thinking about the constant barrage of news stories years ago about the real and imminent threat of germ warfare. The US, and countries hostile to the U.S., were all developing biological forms of attack. Remember anthrax? When the U.S. was attacked with anthrax, do you remember the panic that followed?
It was so scary because it would be so easy to release deadly germs on an unsuspecting public; the right germ could spread like wildfire. And never get caught.
Or, consider what would happen if a U.S. lab developing these weapons had an accidental release? Or if the US continued it’s long practice of using it’s own citizens as test subjects?
In fact, that’s exactly what happened: first military volunteers (conscientious objectors could serve in this way), then penitentiary inmates, and finally people who lived in big cities (these were involuntary participants, used to test the deployment devices for large scale assaults). These last, we are told, were exposed to only very “mild” germs. It’s all very disturbing.
If CFS were the result of bad science gone rogue, would that explain the CDC’s seemingly irrational determination to do nothing about it, to keep us all in the shadows and out of the light?
Would that explain the bizarre CDC reaction to the outbreaks at Incline Village?
Would that explain the sudden and lengthy silence of the media on germ warfare? Did someone solve the problem, all over the globe, while I wasn’t looking? I don’t think so. So why isn’t it in the news?
If releases of these substances were happening here (for any reason), making people sick — would it be kept quiet for fear of mass panic? How to keep it quiet? Spread the idea that the sick people are actually just malingerers, crybabies, and drama queens? Make them the objects of scorn and contempt? Give the disease a whiny yuppie name?
Then one day I was browsing in a used bookstore and came across a book titled “Germs”, a New York Times Best Seller, by Judith Miller, Stephen Engelberg, and William Broad. All three are Pulitzer Prize winning journalists and it is a fine bit of investigative reporting, fully documented with sources. Highly recommend it (haven’t finished it yet).
In this book they lay out the entire history of modern germ warfare, way back to the 40s. They identify which countries have had stockpiles, accidental releases and deliberate attacks. They identify the U.S. scientists and labs that developed an enormous quantity and vast variety of biological weapons in this country, and the official U.S. policies on their development and use.
Interestingly, one of the policy decisions was to create germs that would debilitate, but not kill most targets (a few might die) – as opposed to other countries whose anthrax and other weapons were typically deadly). We wound up developing some of those too, but our reasoning was that it was more humane and better PR not to kill, and that being sick would just as effectively remove soldiers from the battle field and have the added bonus of requiring additional resources to care for them (our stated target was soldiers, not citizenry).
Yet from a terrorist standpoint, if you wanted to bring down a country inconspicuously and weren’t in too big of a hurry, it might be more strategic and less conspicuous to cause debilitating illness – to create large population too sick to work, but not sick enough to die. Eventually, there are not enough people working to support all the people who can’t work. It costs the nation billions of dollars in lost productivity, not to mention disability payments. En masse, it cripples a nation, just as effectively as it cripples an individual.
Or, what if these experimental modified germs were released without actually knowing or understanding the extent of the damage they would cause? That’s why they needed test subjects, to find out.
Those debates in the 90s about germ warfare and stories about anthrax attacks were just the culmination of 50 years of secret programs that are described in the book. They used MANY germs and mass produced them, creating huge stockpiles of this stuff.
One other thing – this would also help explain why Gulf War Syndrome has so much in common with CFS. Maybe there is some “friendly fire” in war zones with the same or similar biological weapons.
Food for thought. When I say conspiracy theory, I am not kidding! There is information on the web that is similar to that in the book, and specifically calls out a mycoplasma developed for warfare using mutations of brucellosis bacteria and a visna virus – designed to debilitate, rather than kill.
There is no question that the germ warfare programs exist, that there were accidental and deliberate releases of a variety of pathogens in a variety of places, and that these pathogens were designed to cause widespread debility, not widespread fatality. So……it’s a very interesting read.
Dear Kate,
OMG. What a frightening but very possibly real thought. marcie
Kate,
I am just now reading your comments. Very interesting. This topic of biowarfare engineered organisms is something no one wants to discuss or think about.
Several months ago NPR had a report that the military intentionally exposed 60,000 U.S. Troops to mustard gas during WW2. The troops were not told of this- just ordered to enter a room where the gas was released, stay for a specified time, etc. Even after this atrocity was admitted by ‘officials,’ the VA delayed and failed to compensate and help individuals.
This past Spring a potential bioterror bacterium accidentally escaped from a high security lab at Tulane – Burkholderia pseudomallei. It is unknown as to how this happened.
Thought provoking points Cort, thanks.
I think ultimately the ‘burden of disease’ criteria used by the NIH is a major player in funding inequalities. That and the fact that committees make these decisions. For all we know they could be throwing darts at a dart board to make their choices. We really need some accountability in this process, and an updated perspective of what constitutes the burden of a disease on society. And of course probably nothing will change unless Congress mandates it.
I agree we have little idea how these decisions are made. Who decides if ME/CFS is going to get an RFA. Well, it’s probably been the Trans NIH working group which has never given us ANY money for any projectes that I can tell over the past 15 years. And they are supposedly our main source of income.
But then who decides the Working Group is never going to work out or who puts pressure on them to make it work out? That huge question – who really is the decider in all of this – or who to go to get those major changes done – I have no idea!
Cort, FYI it is very hard to comment with an ipad because the banner for liking, tweeting, etc cannot be closed or moved and it lays on top of comment boxes where I am typing but can’t see it…..
Darn..Thanks for letting me know. We’re moving to a new website hopefully in about a week and hopefully that problem will be over. Let me know if it isn’t fixed.
I think our culture’s bootstraps mentality has a lot to do with our illness being underfunded. People are expected to put up with mental and physical suffering in this country. Tough it out, walk it off, there is a deficit of empathy and good old fashioned SYMPATHY in this country. Just watch someone’s face change when you say you have to go sit down because you can’t stand anymore, or you have to leave, or you can’t go in the first place. Oh my, the judgment begins! Lazy, silly, too sensitive, weak-willed, genetically inferior, selfish, childish, pitiful, hypochondriacal, soft, and ridiculous.
I would love to see our culture accept that illness is undeserved. Right now, most people think you did something to cause your infirmity, if infirmity exists at all. Our bodies are vulnerable to attack. We have been attacked in some way, made less than able, disabled by this disease. but there isn’t enough sympathy in this culture. We have been judged not ill enough and so we are expected to get with the program. The people who wrote the program do not have CFS and they will never really know what it’s like. That’s why they don’t care enough.
I never cease to be amazed by the obvious intelligent people involved in this illness. People who “had it going on” just prior to their sudden onset of this severely debilitating illness. Type A’s. High achievers. Did we genetically push ourselves over the edge? What would have never happened to a similar person? My brother has MS and my daughter only Raynaud’s thus far but I do feel that there will be a genetic connection to this neuro-inflammatory disease. marcie
Amen, Diana. There IS too little sympathy in the world. That said, I never could have imagined how disabling chronic pain could be until I had it. The fact that Fibromyalgia/CFS is ‘invisible’ adds to the confusion. I’m relieved that my doctor can see my knee swelling (unlike my back), because at least he won’t imagine I’m faking that. Fatigue is a far second compared to pain for me, so I can’t naturally empathize with that symptom as much, although of course I believe those complaints as readily as my own. An example is menstrual cramps. My mother and I never had them. But I still believed those friends who had to lie in bed with a heating pad for a couple of days. I never thought they were ‘faking it.’ Who wants to stay in bed with a heating pad? But many in our culture assume you’re making excuses. An offshoot of this is I never beg off on something and say it’s pain-related unless it IS pain related. I never want to feel like I’m crying wolf, even though there’s no way anyone else can know but me. But I know. I think that’s the bottom line. We have to be okay with people not believing us; at least those not in any position to help us. It IS terrible that doctors don’t believe us, because it keeps us from getting the help we desperately need. But hoping others will understand, while it would be nice, is an unrealistic expectation and is giving our control away. However, although it’s seldom, it still touches me when friends ask “How are you REALLY?” There’s a stigma attached to chronic pain and fatigue similar to mental illness, and it is sad.
OK, I’ll have a go. Is there a prize?
It has been mentioned in passing above …
No one (as far as I know) as ever had Cause of Death: ME/CFS written on their last bit of earthly red tape.
I believe the lack of deaths probably plays an important in shaping why this and other disorders have been neglected.
Until recently no one had Me/CFS as their cause of death, and only recently have a few cases come forward.
If you check out this link http://www.stonebird.co.uk/hooper.html
they have a pretty thorough (long) compilation of ME/CFS including deaths and one or two where the coroner wanted to put it on the certificate but was pressured by the hospitals and doctors not to.
And yes I think (can’t find the post now) is right about there being much much higher and earlier risk of cancer, heart disease, suicide and other deadly diseases and THOSE get put on the death certificate.
But when that happens I say well sure, but then you have to do the same for cancer and all the other diseases, it’s not the cancer that’s killing them, it’s the organ failure etc. but there’s a stigma for us.
Telula, Thank you for providing the links to that exhaustive body of research conclusions. While somewhat alarming, it was encouraging to so much serious work being done to discover causes of and correctly catagorize ME/CFS. I also have fibromyalgia & hadn’t known it was already widely considered to be an auto-immune disease. The deaths that WERE allowed to be registered as ME/CFS, were frightening to read about. My heart breaks for those patients & the many levels of suffering they eventually succombed to. That autopsies were done specifically to look for neural inflammation, in part, strengthens the hypotheses currently being studied. Thanks again.
Sophia Murza in the U.K. http://www.sophiaandme.org.uk
Her death certificate identifies CFS as the cause of death. There have been several others as well, according to Wikipedia:
Death[edit]
For two years following her sectioning, Mirza’s health deteriorated. By September 2005 she took a significant turn for the worse, developing intolerance to most of the food she consumed, ear infection and severe pain, and was only able to consume a small amount of water.[1] Mirza died on 25 November 2005. Initial autopsy results were inconclusive for her cause of death,[1] but the results of an inquest released on 13 June 2006 determined the cause of death to be acute renal failure due to dehydration.[4] Though initially reported by New Scientist as the first death worldwide ascribed to CFS, the magazine later acknowledged that other deaths had been directly attributed to CFS in the United States and Australia.[4] Fatalities have been attributed to CFS or myalgic encephalomyelitis since at least 1956.[5][6]
Inquest[edit]
An official inquest was held to determine Mirza’s cause of death, including an autopsy. The coroner concluded Mirza died as a direct result of CFS. Considered and eliminated were sleep apnea, drug use, and all other possible causes of death that could have been consistent with the autopsy results.[4] A neuropathologist testified at the inquest that four out of five of Mirza’s dorsal root ganglia showed abnormalities and evidence of dorsal root ganglionitis, inflammation of the dorsal root ganglion.[7] A neurologist who consulted on the inquest stated the changes in the spinal cord may have been the cause of the symptoms Mirza experienced as part of her CFS.[4] The findings were cited as a demonstration that CFS is a physical condition, with implications for physical roots to CFS traditionally rejected by psychiatrists. There was disagreement over whether to use the term CFS or ME in the final report with the pathologist preferring the term CFS due to the lack of muscle inflammation, and because he saw CFS as the modern term.[7]
Thank you, Sophia, for an important contribution and mayhaps a first. This American thanks you for such clear and concise and referenced information. marcie myers.
“… has ever …”
Diana, I agree completely with you regarding a lack of empathy and sympathy in our society. I have been told things that have shocked me, such as….. if my priorities were right I would not be ill, that even when they feel bad they just do what they have to do, etc. No understanding that we simply cannot DO. I took a short walk and stopped to talk with a gentleman in his 90’s, I had to sit down due to weakness, dysautonomia, etc and he continued standing and did make a comment about me sitting down because I rhink he could notice that I could not continue standing and needed to rest. I am not in my 90’s and became ill in my 40’s . Whenever I am out and about it is because it is a good day, bad days I remain inside, in bed or lying down. It is very frustrating having an illness that is misunderstood and disregarded, I feel misunderstood and disregarded and disrespected. I do not like to discuss my illness or name it because I don’t want to deal with the look, the blank stare, the dismissal, it is painful. Mast Cell Activation Disease seems to be a fit for my illness/ symptoms and of course that may only be one aspect of the dysfunctions in my system. I am looking forward to the next blog, thank you Cort.
The misunderstanding and disregard are emblematic of why this disorder has never received the support it should have.
But who’s responsible for the lousy name, some of the poor definitions and no drug approval?! Deliberate actions of government. Cheaper to dismiss or blame patients for behavioural tendencies.
In the UK until recently, the funding went towards furthering the psychological model. If all funding went towards large study or studies which replicate positive studies that could show biomarkers and a concerted effort to establish what the objective signs are , so that at least research would be focused on the same illness in similar cohorts, we might get somewhere.
Good questions. I believe the “real reason” can explain all that..including the psychological emphasis.
Excellent comment, Tally.
Cort,
Maybe the first thing we can work on as far as advocacy is getting it moved out of women’s health. Proving that men and children (boys and girls and adolescents I believe have ME/CFS 50/50) would be the first step to more funding.
Moved into what I am not sure but it is obvious it isn’t a women’s health issue. So maybe researchers can point us into another direction even though we don’t have the PROOF of what it IS and how it is CONTRACTED but getting it out of women’s health to me is more important than the name at this point, IMO.
Very good comments……which brought more questions to mind. Most have said this is not a deadly illness but I disagree. It’s deadly from an early stage…..it kills our spirit, it deadens our will and our ability to do the things we love to do……the things we can do to support ourselves. It kills our ability to function normally in society. It kills important relationships…..it takes down our immune system and it takes down our mental capacity because of brain fog. This is a very serious illness that takes down people in the prime of their lives. It flattens us and we lose everything from loving spouses to homes and way of life. Everything changes in time and we are no longer the same person. We’re a deflated remnant of a balloon that once sailed through life…..going with the flow of the wind. Now we lay flat on the ground and will never rise again. That’s a living death…..hell.
I think everyone has to stop trying to find the cause because there are many causes….it really doesn’t matter so much what the cause is, it’s the end result of what happens in the central nervous system once this has been activated in our body. Once activated, it follows a pattern and it DOES progressively get worse over time unless corrective action is taken early on to stop the pattern from progressing. Once it’s progressed, the damage is done. But still we are ignored and laughed at by medical personnel and close family and friends.
I’ve been faking my way through this for 40 years…..I don’t talk about it to most people. The people I have tried to explain it to haven’t been able to grasp it. So, I no longer try to explain anything. I allow myself to cancel plans at the last minute now, I allow myself to say no to things….for me, that’s progress.
Dear Marsha,
SO well said! The odd occasion when I make it out of my house, I look the picture of health because that’s the only times that I can pull it together enough to get showered (isn’t it awful how even that is too much on many days?), dressed, and out. Most days are left floundering at home, having lost my spouse years ago to this disease in a traumatic manner as well, alone in a t-shirt or whatever is closest. And it has progressed in its own subtle manner as you said over the years, slowly, insidiously. I’m not sure what the future will bring but I, too, have at least been making peace with this being the hand I was dealt and not allowing just the thought to crash me worse. Best wishes to you and all of us. marcie
Yes, well done. You speak for all of us.
Marsha, you wrote one of the most honest and expressive descriptions of this illness I’ve ever read. I don’t know how often you have the strength to write, but you have a gift. I hope you’ll share this gift often. Even if the people around us don’t understand what we’re going through, even though we are living in a death-like state, we still have each other for support. That may not help much, but as intangible as it is, we make up a community. I have been an Outlier most of my life for various reasons. Now I know that was training for this time in my life when I am more alone than I have ever been. Thank goodness for the internet. It’s my only contact with the outside world right now. If you would like more personal support day to day, ask Cort if he can give you my email address. You are not alone, and there are people who really care about you.
Thank you for your kind words Julie, Kate and Marcie. Facebook has been a life-saver for me and I’ve met many people who are going through the same things I’ve experienced. I’ve made some very close friends from all over the country and many parts of the world through closed or private groups on Facebook.
If any of you would like to be a part of a group, please let me know. We all support one another and share new information and ideas.
Thanks, Marsha, that’s very good to know!
Thanks Marsha. Is it possible that I could get more info about the support groups you belong to?
Dear Marsha, This is Marcie Myers and my email address is slosouljourn@live.com. I’d like to connect with a few other people when I have the energy. Thanks much. Hope you’re hooked up with meaction.org’s new site. MM
One of the biggest problems was Simon Wessely and the wessely school of psychology and the insurance companies he worked for.
http://www.angliameaction.org.uk/docs/wessely-misleading.pdf
http://www.sophiaandme.org.uk/collusion.html
They have diverted billions of dollars of research money from finding a medical cause for Fibromyalgia, CFS/ME and Gulf War Syndrome to bogus psychological treatment because it cost less for the insurance industry.
Anned, you’ve probably hit the nail on the head. I’ve found, in 58 years, that whether the issue is healthcare, politics, manufacturing, food industries, agriculture, development, or what ever issue anyone chooses, money is at the heart of it. Profits always trump quality of life for everyone except for those at the very top, the exceedingly wealthy. Greed wins, people lose. it’s like in the film “All the President’s Men”, about Watergate: follow the money.
Prof Weasel’lie appears to be re-evaluating?
http://www.newscientist.com/article/dn27813-antibody-wipeout-found-to-relieve-chronic-fatigue-syndrome.html
http://www.newscientist.com/article/dn27659-cheap-blood-test-reveals-every-virus-youve-ever-been-exposed-to.html#.VY7jM_m6eUk
There is also the huge issue that the U.S. And a lot of the world aren’t taught to ‘believe in’ or understand that there is chronic illness in the world.
The medical field and society teaches that there are two types of illness: deadly and curable.
We are taught and shamed into believing that chronic illness ‘doesn’t really exist’, ‘you just need to try harder’ etc etc.
People these days somehow think with medicine as advanced as it is that people couldn’t possibly be in such chronic pain and illness for their whole lives, or if they are they’re in wheelchairs or it’s really obvious visually. And people don’t want to see it, they don’t want to believe OR see that there is so much suffering happening everyday for many people. They act like it’s an imposition on them to deal with such ugliness in the world , rather than a hardship for us.
It’s similar reasoning for why many people have such stigma against mental illness. Also the reason people like to concentrate on the success stories of many illnesses/diseases or physical injuries, instead of the millions of others who are still suffering.
That’s how we get all these people, even family and friends telling us to just try this therapy or herb or medicine or just don’t be so lazy, just try harder and you’ll be fine.
We all need to shave our heads and wear scarves to make our invisible illness visible. We could choose national CFS day to do this. It would get attention on ME and generate conversation about why it is even more debilitating than chemo, etc. we would need to get out of the house that day, of course, or else invite people over!
i would definitely shave my head for this! Not sure if it will be as much of an impact as I can’t leave my house last few months. But I would definitely do it.
I already know someone who does it regularly because she can’t wash her hair so she just buzzes it off.
Dear Telula,
I’m sorry you aren’t able to leave your house – hoping that changes for you soon. Thanks for being willing to shave your head….i sort of think we need to make some kind of statement to garner national attention, and show solidarity.
we could also use hypoallergenic face paint to “tattoo for a day” a sign for ME/CFS? Or we could put signs in front of our houses.
Or we could shave our heads and paint them?
(I’m trying to think of things that won’t affect people’s immune systems or their chemical sensitivities but are visually obvious)
The people who are well enough could do something visually that says ‘ask me about my ME/CFS’ and have a short speech prepped about the funding and the huge disability level etc.
Anyone else have any ideas?
Today is Severe ME day.
We need NIH funding so:
Need everyone and their friends to take 2 minutes to put in their zip codes at a petition that will automatically go to their state senators and representative
Please meet with you representatives. I met with California District 15 representative Eric Swalwell today and he was not aware of ME-CFS and will review this now
Anna Eshoo, CA rep has sent letter to NIH to further investigate ME-CFS.
If everyone presents their case to their representatives, ideally coordinated with more than one local ME/CFS to show some solidarity, this would help.
This petition will close end of month so please enter zip and sign now, then forward to friends.
http://my.meaction.net/efforts/tell-congress-to-support-funding-equality-for-me-cfs/near?source=&location%5Bquery%5D=&location%5Blatitude%5D=&location%5Blongitude%5D=&location%5Bstreet_number%5D=&location%5Bstreet%5D=&location%5Blocality%5D=&location%5Bpostal_code%5D=&location%5Bregion%5D=&location%5Bcountry%5D=&location%5Bvenue%5D=
But I was wondering whether the reasons are detailed.