The Bottom Forty at the NIH
The first part of this blog series was focused on chronic fatigue syndrome and fibromyalgia. Now, in an effort to understand why these disorders get such poor funding, the focus broadens to the bottom forty of the two hundred plus conditions and disease categories the NIH provides funding levels for.
The bottom forty diseases at the NIH get a small fraction of its funding.
The NIH spends about $440 million/year on the bottom forty diseases. Compare that to the NIH’s total budget ($30 billion) and you can get a rough estimate of how little the money it spends on them.
Where do ME/CFS and FM rank in all this? Chronic fatigue syndrome is the 10th and fibromyalgia is the 18th worst funded disease category/condition at the NIH. If you take away three non-disease categories (hyperbaric oxygen, climate change, global warming) the NIH funds, ME/CFS becomes the fifth worst disease funded by the NIH. That’s a pretty low rank for a disease studies suggest affects a million people and causes tens of billions of dollars in economic losses.
The bottom forty can divided into three categories: rare disorders, common disorders and “others” – a category that includes few disorders.
The Rare Disorders (16)
| Name | Prevalence/Incidence | # Effected in the US | Economic Burden/Year | NIH 2016 est. Funding (millions) |
| Batten Disease | 2-4/ 100,000 births | 5 | ||
| Cerebral Palsy | 766,000 | 21 | ||
| Charcot-Marie-Tooth Disease | 1/2,500 | 120,000 | ? | 14 |
| Duchenne/ Becker Muscular Dystrophy | 40,000 | 33 | ||
| Cooley’s anemia | 1,000 | ? | 18 | |
| Downs Syndrome | 1/691 babies | 400,000 | ? | 19 |
| Dystonia | 16/100,000 | 5,000 | ? | 13 |
| Facioscapulohumeral Muscular Dystrophy | 4-12/100,000 | 2,400 | 7 | |
| Hepatitis A | 3,500 | 3 | ||
| Mucopolysaccharidoses (MPS) | 1 in 25,000 babies | ? | 7 | |
| Neurofibromatosis | 100,000 | 22 | ||
| Osteogenesis Imperfecta | 1/20,000 births | 20-50,00 | ? | 12 |
| Pick’s Disease | @20/100,000 | ? | 4 | |
| Spina bifida | 3.5 per 10,000 births | 1,500/year | ? | 10 |
| Tourette Syndrome | 1/360 children | ? | 4 | |
| Valley Fever | 10,000/year | ? | 4 |
Disorders with under a million people were considered “rare” disorders. (Only cerebral palsy, however, came close to affecting a million people. Most of the disorders in this afflict less than 50,000 people in the U.S.)
These disorders consist mostly of genetic disorders, neurological disorders and pathogen triggered disorders. Many are serious, crippling diseases. While the individual impact of having or caring for someone with one of these disorders is horrendous they are too rare to elicit economic impact studies.
The NIH spends an average of $12.4 million/year on these disorders.
The Common Disorders (16)
| Disorder | Prevalence/Incidence | # Effected in the U.S | Economic Costs/Year – US | NIH 2016 est. Funding (millions) | |
| Allergic Rhinitis (Hay Fever) | – | 10-30% of population | 30-90 million | 5 billion (2002) | 6 |
| Aphasia | 1,000,000 | 25 | |||
| Chronic Fatigue Syndrome | @75% | 1-4 million | @20 billion | 6 | |
| Digestive Diseases – (Peptic Ulcer) | – | 4% of population at any time | 12 million | $6 billion (1998) | 15 |
| Endometriosis | 100% Female | 10% of women of reproductive age | 10 million | 22 billion (2002) | 7 |
| Emphysema* | – | 4.7 million | 27 | ||
| Fibromyalgia | 75% female | 2-5% of women | 10 million | 18 billion | 11 |
| Fibroid Tumors | 100% female | 9 | |||
| Interstitial Cystitis | 5-9:1 | 60-200/100,00 | 1-2 million | 428 million (1987) | 10 |
| Irritable Bowel Syndrome | 66% female | 10-15% of population | 21 billon / 1.6-2 billion | Not tracked | |
| Migraine | 75% female | 36 millionChronic migraine – 2.4-7.1 million | 31 billion | 21 | |
| Pelvic Inflammatory Disease | 100% female | 5% of women of reproductive age | 1 million yearly | 1.9 billion (1998) | 2 |
| Psoriasis | – | 7.5 million | 35 billion | 13 | |
| Temporomandibular Muscle/Joint Disorder (TMJD) | 80% female | 10 million | ? | 18 | |
| Vulvodynia | 100% female | 8% of women | 30 billion + | 3 |
Common disorders are as common in rare disorders into the NIH’s bottom forty. Two types of common disorders can be found: one which mostly affects women a smaller category that is non gender based. First the non-gender based category.
The Non Gender Based Common Disorders (n=5)
Several different scenario’s could explain the low spending on these disorders.
Common but manageable – The spending on allergic rhinitus and peptic ulcer may reflect disorders that are common but not particularly debilitating. While the estimated economic losses for allergic rhinitis and peptic ulcer are high ($5 /6 billion dollars a year) they are low relative to the huge number of people they affect (30-90 million/ 12 million Americans). (Peptic ulcer is, however, responsible for hundreds of thousands of death worldwide.)
Moral indignation – Emphysema is another matter. I was unable to get an economic loss figure for emphysema – the most severe form of chronic obstructive pulmonary disorder (COPD) – but, since it often results in death and it is believed to affect almost 5 million Americans – the economic costs are clearly very high. Emphysema is probably near the bottom of the NIH’s spending list because most cases of emphysema are directly linked to smoking – an avoidable habit.
The Gender Based Disorders
For want of a better term the second was called gender based disorders. Ten of the fourteen common disorders in the bottom forty at the NIH fit this profile. (They are in blue in the table.)
Female gender is characteristic of common disorder getting little funding
These disorders generally do not kill but may have serious consequences. Endometriosis (7 ml/yr NIH funding), for instance, is the number one cause of infertility in the U.S. and is responsible for 400,000 hysterectomies a year. Pelvic Inflammatory disease (2 ml/yr) leads to 125,000-150,000 hospitalizations and causes 75,000 cases of infertility yearly. Studies indicate that people with interstitial cystitis (10 ml/yr) experience a quality of life similar to people with rheumatoid arthritis, chronic cancer pain or kidney dialysis patients. People with ME/CFS (6 mil/yr) have significantly worse functioning than people with congestive heart failure, type II diabetes mellitus, acute myocardial infarction, multiple sclerosis and depression.
Migraine (21 mly/yr) causes three times as many years lived with disability (disability adjusted life years) as epilepsy yet gets a fifth of the funding that epilepsy does. Irritable bowel syndrome (IBS) does not make the list (because the NIH doesn’t track it’s expenditures) but is believed to result in 2.4 and 3.5 million annual physician visits for IBS in the United States alone. Misdiagnosis of IBS is believed to be responsible for considerable numbers of unneeded hysterectomy and ovarian surgery. Half of the gender based disorder, interestingly enough, affect the female reproductive system.
By all accounts these are serious disorders that cause much illness and distress. They all, however, share the following characteristics
- They are primarily found in women
- They generally produce poorly defined, difficult to assess and invisible symptoms such as pain and fatigue
- They do not usually cause death
- Many have negative psychological connotations
It is the inability of the NIH to adequately understand with this group of characteristics I believe that is responsible for their poor funding. The best way to explain this is to look at perhaps the most alarming example of a funding system gone wrong: migraine.
Migraine
Migraine was a revelation to me. I associate migraine with disability and horrendous symptoms I assumed it would be getting a hundred million dollars in funding. Migraine is also revelatory in that it has managed to fix many of the problems facing ME/CFS – yet is still in the bottom forty.
Migraine’s progress in the research and drug communities has not translated into significant funding
Migraine’s problems with diagnostics were cleaned up 25 years ago. Pathophysiological findings and FDA approved drugs in the past 15 years have obliterated the idea that migraine is a psychosomatic disorder. Migraine should, one the face of it, being doing well.
It is, fact doing better. Migraine’s reward for fixing its problems is that it is in the upper tier of the bottom forty disorders. Over the past five years, it has seen a thirty percent increase in funding. The difference between the $21 million/year migraine receives from the NIH and the $5 million ME/CFS receives is a vast one.
Yet migraine is still clearly significantly underfunded. It causes considerably more disability than epilepsy and hepatitis C but receives five times less funding. It’s believed to cost the U.S. 21 billion dollars a year in economic losses. By all rights migraine should be receiving at least $100 million/year in funding but it isn’t even close.
Why? One reason is migraine has never gotten beyond its long history of delegitimization. The idea that a “nervous temperament” is behind migraine and it’s many triggers (foods, odors, colors, sounds, stress) has pervaded thinking about it for over 200 years. Many neurologists prefer not to see migraine patients because they are considered “difficult”. Despite the pathophysiological findings and the drugs (which don’t work for everybody) many providers still believe psychological factors play a significant role in the disease. They don’t consider them people with a major brain disorder; they consider them whiny, hypersensitive women.
Ironically, they are hypersensitive. Migraine, like FM and ME/CFS is a hypersensitivity disorder. The question is where do you assign the cause for the hypersensitivity – in the brain or the mind? Far too many neurologists still assign it to the mind.
Migraine patients routinely face comments that betray a grave misunderstanding of how severe their disease is. Like ME/CFS and FM patients they are encouraged to “just get through it”, to stop stressing about their condition, to relax more, to distract themselves. The severity of the disease has not gotten through.
Having a migraine, it turns out, is something like giving birth; until you’ve had one you don’t have a clue what it’s like. John McCain’s wife, Cindy described her decades long struggle with migraines by referring this way to her husband’s torture in Vietnam: “Being tied to a chair for four days. I can’t imagine how unbearable that pain must have been, but yeah, I can, because a migraine may really come close”
The Invisible Symptom Problem
The symptoms migraine and the most of the diseases in this category are associated with are clearly part of the problem. ME/CFS is associated with fatigue. Migraine is associated with headaches. Fibromyalgia is associated with pain. All these appear to manageable to anyone who hasn’t experienced them in their full glory.
Invisible symptoms surely present a barrier to legitimatization
Contrast these symptoms with those associated with well-funded diseases. Multiple sclerosis is associated with crippling nervous system problems; epilepsy with seizures; heart attacks with death; diabetes with blindness, amputated toes and worse.
It will probably be impossible to make the symptomatic aspects of these “invisible diseases” ever visible enough to achieve adequate funding. Most people without these disorders experience fatigue and pain as relatively transient, minor problems and they relate to them in that way. They simply can’t conceive how bad this symptoms can get: you’ve got to have one of these disorders to understand what it’s like.
That’s unfortunate because it appears that many funding decisions are still often very much symptom based. Even very rare disorders that cause death or visibly crippling symptoms get equal or more funding than diseases that cause widespread distress and produce major economic losses but have largely invisible and mostly discounted symptoms.
The Task
Despite the lack of significant mortality, irritable bowel syndrome is associated with high direct and productivity costs. Medscape
The real reason ME/CFS and FM and other disorders like it get poor funding is that broad historical forces have relegated them to the bottom strata of the NIH funding pile. The NIH simply doesn’t “get it” about any of these diseases. Give the NIH a visibly crippling disease that causes mortality and it will be all over it. Given it an “invisible” disorder that causes significant disability and causes major economic losses but does not kill and it will mostly ignore it.
Changing that gestalt is a key task for advocates. Honest conversations with decision-makers would reveal what they say to others or to themselves to justify keeping these disorders stuck at the bottom of the funding pile. Behind all those conversations though, must lie one basic belief – that they are simply not considered serious diseases.
If the NIH believes that ME/CFS, FM, interstitial cystitis, migraine and others should get less funding than other diseases it should be tasked with saying why. If the NIH considers serious illnesses to be those that cause death – that should be clarified and addressed. How the NIH makes the funding decisions it does needs to be made explicit. What means it has to adapt its funding algorhythm to new and emerging diseases (such as ME/CFS and FM) is a good question to ask.
How to fix the NIH? Challenging it and demanding answers may be one way.
Fortunately, the conversation about what disorders the NIH should be focusing on is occurring. The recognition that NIH funding at times bears little resemblance to disease burden is growing. A recent book indicated this is a worldwide problem. Op eds are showing up in major newspapers. The NIH is being forced to respond.
That a group of primarily women’s disorders are getting short shrift (again) has not yet become a talking point in the media. Why that hasn’t happened is something of a mystery to me but getting that question into the mainstream media would make a big difference.
The best way to shift the conversation (and the funding algorhythm at the NIH) may simply be to continue focusing on the economic impacts these disorders have – and making visible the funding gap that is present.
Is the NIH fulfilling its mandate to serve all Americans or is it picking winners and losers in the illness funding game? That’s a question the NIH should be confronted with regularly.
____________________
The “Others”
Other (8)
| Name | NIH 2016 Est. Funding | ||
| Agent Orange & Dioxin | 8 | ||
| Climate Change | 6 | ||
| Digestive Diseases – (Gallbladder) | 10 | ||
| Global Warming Climate Change | 4 | ||
| Hyperbaric Oxygen | 2 | ||
| Stem Cell Research – Umbilical Cord Blood/ Placenta – Non-Human | 7 | ||
| Teenage Pregnancy | 16 | ||
| Arctic | 16 |
That sure puts it in perspective. It is amazing how blind society has been to suffering if it has certain labels attached. It was a surprise to me sometime ago to learn migraines had the same suspicious all-in-your-head tag. Those are incredibly painful and wipe out a day or days at a time.
I was completely shocked by that. I’ve never had a migraine (knock on wood) but from what I hear I wouldn’t wish them on my worst enemy.
I suffered with migraine most of my adult life. It was terrible in my youth but never kept me down for more than a day or two. I wasn’t one who had them fireproof a week at a time, and that may be because the meds worked on me IF i had them on me and could take them immediately.
That said, I would without hesitation trade CFS for migraine and thank a merciful heaven for the gift. I think sometimes we forget what we truly suffer, what we have really lost. Migraine took some days from me. This disease stole my career, my security, my IQ, my muscle tone, my heart function, my functions of daily living, my future, and most of the people I love. This disease stole my life. I would cut off an arm or a leg if it would buy back my vitality. If I could have my life back.
What a powerful statement, Kate..
“This disease stole my career, my security, my IQ, my muscle tone, my heart function, my functions of daily living, my future, and most of the people I love. This disease stole my life. I would cut off an arm or a leg if it would buy back my vitality. If I could have my life back.”
Thanks for the article!
And lucky me! I have ME/CFS, Migraine, *and* Endometriosis!
Back to the topic, so, it’s mostly invisible, chronic illnesses that affect women which get the least money? No surprise there. I’ll give one personal example of the treatment of visible vs. invisible symptoms.
My endometriosis surgery (removal of abnormal tissue, not a full hysterectomy) was successful. It reduced my pain down to a low level, something very manageable. So, I’m very grateful for that.
But right after my surgery I was given all kinds of pain killers for post surgical pain. The thing is, my pain from surgical incisions was NOTHING compared to the endometriosis pain. Yet those incisions were visible and doctors/nurses seemed to expect that they would hurt.
My mother had three children and she once told me that her endometriosis pain was worse than childbirth. Although I’ve never had any children myself, I believe her. My mother ended up having a hysterectomy.
My invisible pain from endometriosis was never treated seriously. I had to describe in quite gory detail just how much it hurt, which I hate to do because it sounds so melodramatic (e.g., “The pain is so bad I’m on the bathroom floor screaming”). This was the only way to get any pain killers that would help me. And yet, after surgery, when I did not need pain killers, doctors were ready to give me lots of pain killers. They sent me home with more pills than I used, and there were refills on top of that.
Even though this example falls in the “pain” category (pain was mentioned as something folks do not relate to as serious) this is clearly an example of a visible vs. invisible symptom. It’s true that surgical pain itself is not actually visible. One can’t tell how much a patient hurts by looking at the incisions. But those incisions are visible and deemed more deserving of pain killers.
That primarily women’s disorders are getting short shrift has not yet become a talking point in the media. If it becomes one and if women’s advocates of all stripes get behind it watch out.
I like this idea.
Cort, I think you summed the information and stats perfectly. I think you hit on most of the key ideas that people responded with in your 1st blog on NIH (lack of ) funding ie more women then men affected and we’re invisible (mostly) and we’re not a health threat to others nor do we necessary die young. It just destroys people’s lives and family.
Hit the nail on the head. Frustrating though. How many more years will it take until we are heard. I don’t really understand why some of these diseases/conditions affect more women than men. I don’t think I’ve ever heard an explanation why this is so.
Women still do not have equal pay for equal work, although slowly this is changing.
We are still a male dominated society even though women are gaining ground. There are far fewer women at the top of corporations than men. There are still more male doctors than women in most specialities. However, I must say that I’ve not been heard by just as many female doctors as male. That stems from a lack of education on chronic pain and central sensitivity conditions and other like conditions in the health care system. There is a huge impact on the economy from millions of people with ME unable to work. One would think that would rattle some bones in government but it does not.
I find when I’ve been ignored or referred to psychologist/psychiatrist for my medical problems it’s often because that particular doctor does not know how to solve (fix) my condition let alone understand it or diagnose it. Failure on their part. Thou must heal and all that crap. If there is not clear, measurable evidence from diagnostics then “it’s all in your head”. Certainly not all conditions have measurable evidence in our world. The diagnostic tools have not been found or invented that clearly indicates what ME is or isn’t, it’s (the dx) still mostly symptom based. Hopefully when measurable evidence is clear then we may move forward.
We really need a powerful spokesperson, male or female who has ME or a close family member who understands ME to shout “help” for us, and keep shouting until we are heard.
Good info Cort.
Another powerful statement
“we’re invisible (mostly) and we’re not a health threat to others nor do we necessary die young. It just destroys people’s lives and family.”
I think I’m going to collect these (:))
Yes, indeed you should. Thanks Cort
Thanks Cort. The name of the disease that we have has been a huge issue. Once people have that first impression its hard to shake it off. If you think about it we really only got good attention when people thought it was able to be transmited in the blood like hiv. Now it affects them.
Look I have been through hell and back with this disease. It does kill with causing secondary issues besides it be more disabling than just about anything out there. We need to get advocacy from well known celebretys and funding period. Case studys like my own case and other very extreme cases so as to show the cancers , heart issues ect that are directly caused by this disease.
I can’t write but I can definitly speak very well in person or on the phone as I was a vp stockbroker. I called one of our advocacy groups and asked to speak with Morgan Fairchild. It seemed as though the pr person was in charge of that and some other bs red tape. Is our advocacy groups getting paid? They seemed more concern with who is in charge of pr ect rather than getting funding for disease. I was very surprised to say the least.
I know there is a lot of intelligent people on this and other sites for cfs. The problem is you need someone like me or a Donald Trump type that can communicate the proper way and get things done. How long has it been now at least 30 years? I’m dying people but I will fight for all of us. I can do it with some help. I have already done much behind the scenes with Doctors ect.
We have to stop taking baby steps. We are like children suffering with no voice.
WE NEED TO TAKE A STAND. WE NEED TO WIN. WE NEED TO DO THIS YESTERDAY. NO ONE IS GOING TO HELP US THE WAY WE COULD. THERE IS NO SHIP COMING IN FAST ENOUGH TO SAVE US. TIME TO TAKE OUR OWN FIGHT. I”M READY TO FIGHT AND WIN>
Lets organize our own group now and start to fight in a very productive and very aggressive way.
WHO IS WITH ME? WHO HAS THE FORTITUDE TO EVEN MAIL ME BACK OR SPEAK TO ME? IF YOU DON”T CALL ME OR TRY BALME YOUR SELVES. PLease don’t tell me your to sick as we are all to sick. If we must lose this fight then lets go down swinging and fighting till there is nothing left. What are you waiting for? Time to take the bull by the horns and make our days better.
People I know your suffering. I’m suffering as well. WE can wait another 30 years or we can fight and maybe just maybe WIN. I wish you all the best and God Bless.
Maybe we need to start talking about how contagious it is! No one really knows, because no research is happening. So we just start saying it everywhere, and pretty soon it’s true and people are talking about that and demanding that something be done. This is what governments do and this is what corporations do – repeat it until they believe it. Why can’t we? And why can’t we write a polite letter to e National Organization for Women sharing this fascinating data and ask them to launch a campaign on behalf of better funding for these invisible illnesses affecting primarily women? Heck, how about a class action lawsuit based on gender discrimination, demanding an injunction preventing any distribution of NIH funds for any research (that should get some attention!) until they have clarified their decision criteria and included in that criteria a requirement for equitable treatment of women’s illnesses?
I like the idea of the National Organization of Women getting on this…I’m going to send some emails out.
Yes! NOW! And get us out of the Office of Women or whatever that place is called where we are wastebasketed.
One of you guys file a discrimination lawsuit for having a male and female disease that’s relegated to some Woman’s Office of Affairs or something like that. Get us into a Neuro Division.
And, I just finished writing both the Cooley Foundation and Neurofibromatosis Organization asking them for their advice regarding how they managed to receive their funding, who did their website, do they have lobbyists, etc. I’ll let Cort know when I hear back. Since they got the big bucks, mayhaps they’ll have some good advice on who or where to go for the same. Can’t hurt to ask. Both of these fall under the Stroke/Neuro Division btw.
Cool! Looking forward to hearing out that turns out.
“I like the idea of the National Organization of Women getting on this…I’m going to send some emails out.”
YES! This is exactly the kind of thing that needs to be done!
“not invisible but not witnessed”. Awesome statement. Sad. I still after 20 plus years have a hard time wrapping my brain around the fact that I am housebound because I am that sick and not because I’m procrastinating, lazy, pensive, or depressed. It’s easy to buy into the idea that there must be something I can do about it because I don’t want my life to be this way and have always felt prior to getting sick that I could affect the outcome of most of life’s trials. Times I do make it out of the house, I look like the picture of health and make my best attempt to enjoy the social moment so I can easily understand how difficult it is when you’ve not witnessed the other 99.99% housebound me that needs a shower for several days now and is living on Raisin Bran. I find myself turning away rather than to people because of the burden I feel that I am. It’s a sad sad circumstance. Power to those of you who have caregivers that love and protect you and bless them. Living alone with this is…. also not witnessed.
Very well said, Marcie. I, too, live alone and only go out when I feel well. Of course that’s when I look my best, too. And the struggle to adjust to the fact that the way I can effect positive change in my life is by not working and limiting social activity sometimes seems like not really living.
More powerful stuff, Jimmy.
I agree we are too used to taking baby steps. Too used to saying or thinking we don’t have the power or the tools. Sometimes you gotta take the bull by the horns and just move ahead.
Add to this that medical research only uses male mice! Female mice are just too complicated. Wow. No wonder I have so many bad reactions to just about every drug I have tried.
Although it used to be true that medical research only used male mice, that is no longer true. I used to work in medical research.
Thanks, very helpful analysis, Cort.
Too bad I’m a male with an invisible “female” pain disease…fibro. They may test those meds on male mice but all of the actual fibro medication tests seem to be done with women. So much for my concerns about endocrinology and neurohormones.
I have had fibromyalgia and chronic pain for almost 20 years, I have been taking FibroProtek which is a formula from Dr. Theoharides, a Mast Cell Disease researcher. This seems to help me as well as hydrocortisine oral meds. I am reporting it only because it may help someone else. I have taken everything in the last 20 years with poor results for pain relief and intolerance to all the drugs including LDN. Jimmy, yes, we need some major way to impact the media and the medical profession, this remains a Joke to all of them. It does not change until they haved a loved one who loses their quality of life and becomes non functional and disabled. It gets reduced to a simple fact…… No one wants to know anything about this , it is too complex, there are no tests that provide evidence. It’s Over ! We don’t die quickly and we don’t look sick.
Thanks for sharing that about FibroProtek.
I was thinking about the complexity issue. These diseases are complex – they seem to affect a number of different parts of the body but I realized that most diseases are probably pretty complex and besides both migraine and fibromyalgia do have a central focus – the brain.
So I’m not buying the “these disorders are too complex for the NIH to deal with” argument anymore. If the NIH felt these diseases were serious enough the complexity wouldn’t be an issue – it would just be something to deal with.
The same is true with no biomarker/few consistent results problem. Again – once you decide you’re going to work on something- it’s just a problem – a solveable problem – that researchers deal with all the time.
The “problem” is that the commitment on the NIH’s end. If they have the commitment they’ll deal with it. They deal with the worst diseases on the planet- they can handle ME/CFS and FM.
Thanks for spurring these thoughts 🙂
Very true!
Hi Cort,
I have long thought that we need is a massive publicity campaign to turn things around, just like the poster campaign that took place in the UK in the1970s that transformed MS from negligee disease to a disease that is now taken very seriously. That campaign was unforgettable and has often come to my mind.
Turning public opinion and getting that support can change everything but it has to be expertly done and very big. How to get that impact today?
I don’t know if we have the funds to create a massive publicity campaign – right now. I do know they’re out there..
What we can do is the build the infrastructure to support a campaign; that is, in the the US a credible National Advocacy organization who’s sole task is to inform, report on and move the federal government to act.
Among other things this group should create a list of actions the federal government should take and monitor it (give it a report card) every year.
I like this idea and we could call it the Sophia Mirza Dance for the Cure, in honor or of the first person ever formally acknowledged as having died from CFS, and in honor of the millions of us who can no longer dance, run, etc. instead of running for the cure we could have dance offs for the cure like back in the 50s or 60s……..maybe dancing with the stars would sponsor us……..
Thank you for writing this. It must have taken ages to research and compile but I have a feeling that this is invaluable information for us and give us more to fight with.
Maybe this needs to be pitched from the point of view that with CFS/Fibro, etc., we simply don’t know what we’re transmitting to future generations. I’m really concerned that I unknowingly have transmitted some of my viral load to my children in utero. Who can really say for certain that didn’t happen, especially since my daughter was just recently diagnosed with an autoimmune disease. Other than mounting a campaign to publicly shame the NIH I honestly don’t know how else to get their attention.
If the science supported that that would be a great “selling point”. The knowledge in the gay community that they were likely next was surely a huge spur to the HIV/AIDS advocacy movement.
Unfortunately nobody has looked at mother to daughter/son transmission in ME/CFS or FM. If they did and found something that would be helpful.
You are exactly right. My daughter is almost 30 and has been diagnosed with PCOS and the symptoms are suspiciously familiar in many respects. Where is that one on the list? Poly cystic ovarian syndrome? I remember watching a presentation by dr. Montoya on YouTube and I started crying first because he said, “this is a real disease”. And then later I cried again because he said mothers most probably do pass it to their children in utero.
I think you’re quite correct in your conclusions, Cort. You clearly did a lot of research on this topic. Many thanks!
Thanks…I’ve been thinking about it for awhile.
Cort (and others),
I’d like more information about how I can get involved in advocacy for increased ME/CFS/Fibro NIH & CDC funding.
I’m moderately affected by the disease (no longer bedridden but still disabled) and as each year passes, I know that the mildly/moderately affected patients need to some how come out and make a physical presence for ourselves and for those severely affected. I’m ready to step away from behind my computer screen and make an attempt at protesting or some type of public demonstration. I believe that the more we are seen and heard, the better likelihood we have at increased funding.
Could you write an article about what we can all do to get more involved (especially for the mildly and moderately affected)?
Thanks Stacy, yes us mildly/moderately ill people are the ones who can drive this forward – and – we really need healthy volunteers…
A blog is coming up on ways to get involved. Luckily Jen Brea is making it very easy..:)
Leonard Jason’s studies into causes of death in ME/CFS–the past one and the one for which he’s currently collecting data–may eventually help move us into that important “death causing” category. I don’t doubt that we already qualify for that one, it’s just that the dots haven’t been connected well enough yet. Jason’s data mining and collecting makes a difference.
Thanks Cort for all of your work. You have been great for everyone who has been or is suffering with this illness. I will continue to follow your posts but will not post comments anymore. We need to get together and think tank and everyone can handle 1 issue toward our common goals. First identify what we need. Who may be able to help us ie politicians actors philanthropists ect. How to get to them. You can’t get to them directly must go through gate keepers. Show real examples and studies of real people. Ect. Put faces to this disease. This group has the intelligence but lacks the will to move forward as a group. unfortunataly there are no fighters on this site. Great let’s look forward to another 25 years of complaining while we sit by a cry about no body helping us. I’ll find another group with this illness that is willing to fight and die for this cause if that’s what it takes.
I know our advocacy has been underwhelming. Check out Jen Brea’s new site though….things should be picking up –
http://www.cortjohnson.org/forums/threads/kickstarting-me-cfs-advocacy-jen-breas-me-action-site.2831/
We need our own lobbyists. We need a national organization and free public service announcements on our local TV stations to put a face and money to our disease. And deciding on a name wouldn’t hurt either. I believe that the diseases receiving big bucks with few patients are a result of DIRECT connections to the NIH, e.g. lobbyists.
I think of hayfever in particular, wondering how it could come up with so much NIH funding and would say the answer is the lobbyists AND pharmaceutical companies, likely one in the same. The NIH gives the money for research and pharm companies are able to quickly develop but yet another pill or spray for the symptoms, yielding great profits.
Although Fibromyalgia doesn’t receive much money, one need only look at network television for a minute before seeing a commercial for Lyrica which I’m certain has gained that pharm company huge profits. As we have no medication thus far, we must head in other directions first.
I looked up Cooley’s anemia, thalassemia, which is a genetic disorder much like Sickle Cell anemia affecting only people of Mediterranean descent. Until genetic engineering is solved such that every genetic disease can be manipulated out of existence, Cooley’s deserves no more than any other that is genetically caused. Find out where the Cooley to NIH connection is and we will have discovered the secret. Truly.
Pelvic Inflammatory Disease,PID, unique to women but contributed sexually by men, is caused by Chlamydia, the number one STD. It is an asymptomatic bacteria until a woman’s entire abdomen becomes abscessed requiring hospitalization and IV antibiotics. Sadly, I can see where the “blame” would fall upon the woman for engaging in sex in general and unprotected sex in particular. It does no damage to the men who carry it and pass it on to their female partners.
Peptic ulcer disease is easily diagnosed and treated by a simple bloodtest for Helicocampter Pylori, a bacteria found everywhere. And while it is true that one could die from hemorrhaging, this is very unlikely with the available antibiotics used to quickly eradicate this bacteria from the stomach. The only caveat to this one is that it has been associated with stomach cancer which would be a whole other diagnosis. So why the inordinate amount of money?
So, lobbyists and a national organization. And why don’t we have public service announcements on television (they are free, people) that would make our disease real with real people real facts real numbers and real public education.
As well, someone with the authority (who is that anyway?) will have to make the decision as to what our disease is to be named and in that regard we are stuck already. Until then, the teaching of our disease to current practitioners and medical students can’t go forward. CFS/CFIDS/ME/SEID is a bit too much, wouldn’t you think? And whatever the battle between CFS and ME’s definitions are…. it is time to make amends and unite. Unite.
One million of us but you can’t even get a petition with one thousand people’s names on it. Where are the one million of us? That’s always puzzled me while realizing that requests to a person with CFS is difficult due to the nature of our disease. Everything needs to be made as simple as possible as in check yes or no, so to speak. Not everyone is computer savvy (as in anyone over 55 generally speaking and including myself).
It would be valuable to compile an actual list (with people’s email addresses or similar) who have CFS so that newsworthy articles and activities could be sent to each person. Further include names of family members and caregivers and friends as well. That alone would empower us further…. if each organization dedicated to us already would be able to combine their mailing lists for the purpose of a national organization and empowerment.
Unite. Lobby. PSA’s. Billboards. Editorials. National Organization. marcie myers.
Forgive me gentlemen, I know this not only women’s disease, but flagging the gender discrimination issue with NIH funding – a real eye opener, Cort – seems like a path to gain support of a national lobbyist organization like NOW or a powerful advocate like Oprah Winfrey. What would happen if zoo rah did a show on this? And then Katie Couric? And So on? What if the princess of Wales and and Angelina Jolie and Meryl Streep and Michelle Obama and Hilary Clinton decided to add their voices? How did the breast cancer advocates do it? The pink thing, for one. It’s the same issue. A women’s disease was largely ignored and underfunded. Something spurred a dramatic change. That’s the model we need to follow. And yes, I know men get breast cancer too……
I agree completely Kate. This is a big deal – a big opportunity! And it’s not made up. This class of mostly women’s disorders affects tens of millions of women and the NIH is throwing peanuts at it…
It is the last great neglected group of women’s disorders. It’s very discriminatory and it ties in with all sorts of negative and untrue assumptions about women.
I sent this email to the National Organization of Women:
Did you know that the National Institutes of Health has relegated a group of prevalent and predominantly female disorders to the bottom of its funding pile? These disorders affect tens of millions of women, often cause disability, produce high rates of fatigue and pain and cost the US economy of upwards of 100 billion dollars a year in economic losses yet the NIH, with its $30 billion budget spends about $10 million a year on each – far lower than their economic impact suggests it should.
They are the last great neglected set of women’s disorders. They include migraine, fibromyalgia, chronic fatigue syndrome, interstitial cystitis, endometriosis, vulvodynia and others. They often affect women’s reproductive systems.
It’s a crime so many women (and some men) have to suffer from these disorders because the NIH – a mostly male run organization (the directors of the Institutes responsible for most of these disorders are all men) – is not interested in funding them. Either undeclared prejudices (that they effect whiny, hysterical women) or an unwillingness to fund diseases that cause pain and fatigue but not death (or both) appear to be behind this neglect.
NOW could impact the lives of possibly 100 million by taking on this issue. Find out more here:
Find out more here: http://www.cortjohnson.org/blog/2015/07/29/nih-blindspot-reason-mecfs-fibromyalgia-poor-funding/
Thanks for your time.
Yeah, Cort !
Way to go Cort! Thanks for demonstrating so quickly and clearly that first steps can be that easy!!
Way to go Cort! Thanks for demonstrating so clearly and quickly how easy a first step can be.
Excellent letter – Thanks so much!
I hope it has a big impact.
Great idea about the Cooley connection, Marcie.
Drug companies are all over fibromyalgia and migraine – the fact that there is a lot of money to be made addressing these diseases indicated how much suffering there is out there – that the NIH is not addressing!
Thanks for the great article, Cort!
Although it is really a discouraging situation.
I’ll write to my congresspeople again.
I hope jimmy finds Jen Brea’s site.
ME/CFS in its severe forms is not an invisible disease. It is an unwitnessed disease. You are at home and in bed, and if someone were there in your bedroom, that person would see that you are visibly ill. But this is seldom the case. It is a tragic irony: the most visibly ill are not seen, they don’t see doctors nor anyone else and thus no one really knows about it. Or if so, such as when a spouse witnesses it, the “others” have to take the spouse’s word on it, which is then just a word. Or the parent’s word on it, when a child has been striken by the illness. – I too think that the NIH simply doesn’t get it, I don’t think they are malignant as in “we know damn well how bad this disease is but it will be costly to acknowledge it”. How could they truly know about it, if the most severely ill are not even seen in this condition by their very own families? Unless… you have a one in a million shot scenario: an absolutely prestigious researcher – Ron Davis – with an absolutely ill son, now talking with the president of that 30 billion dollar Institute…(I hope they are talking, not sure…). And I bet the most convincing statement of his’ would simply be something like: “Trust me Dr Collins, it is a very serious illness, I have seen it with my own two eyes, day after day. Trust me. You have to see it. “
I like your distinction between invisible and unwitnessed.
While Ron Davis’ son is severely ill, Dr. John Chia’s son, Andrew, was also stricken and became the reason for the two decades he’s dedicated to this cause. I hope we don’t need more panels testifying, really, for more government agencies in order to get funding, but Davis, Chia, Lily Chu (others?) would be a great line up. I think other researchers have been more closely touched by the illness (self, family members) than they may share. You’ve got to imagine that if you are a researcher who has had it, or who suffers mildly, you wouldn’t necessarily share that because people may not want to fund your work because you might become much sicker and not be able to continue. Probably the same reason that Morgan Fairchild, rather than actor in the ingenue phase of career, could speak up after years of not being able to.
Yes Christian this is true. As I can say that about my self. I do look sick but I have to fight to see doctors ect. I just went to omi and stanford. It killed me. I gave so much blood to omi for testing and then gave more for there research. Since I have no money I flew back that night. The nurses thought I was crazy and should not even think about flying after giving that much blood. I have been suffering more than usual since then. That was on the 7 of this month. That will help our cause because I happen to be in the worst of the worst category as I have been told by several top cfs docs. Here is the situation as I see it. If people have to work harder or spend money or time to care for you they would rather not. In other words sadly from my own extremely selfish dysfunctional familty I’m an inconvenient truth. What to say about government agencies and burocrats ect. So here it is i have gotten cancer twice in the last 3 years because of this disease. People doctors ect look at me and say i’m so sorry. I tell them cancer is a joke compared to cfs/me. Cancer may kill you but not until its last stages is it as debilatating as m.e .. We have to fight and try to change the perception of this illness. That said on a different note I would be very surpried if this disease does not turn out to be what I long suspected a neuro immune disease. They just have not found the antibodies yet. With money and research will get there.
Dear Jimmy, my heart goes out to you. i suppose there is both good and bad to be either living alone with this disease or to feel bad about having relatives giving care and sometimes even making you feel bad. I hope your trip yields some new knowledge and some helpful treatment for you. Keep the faith; what other choice do we have…. with love, marcie
Hi Jimmy – for me, too, cancer was nothing compared to fms. Well, except for the fear of death, but the pain and fatigue didn’t even come close.
I think you’re right. The closer people get to this disease the more they get it and the more they support it. It’s hard to get it – particularly with this name – when you’re sitting in some office at the NIH…
I hear all you people out there suffering in isolation. Will get there peeps. I promise that to you and me. By the way when I say neuro immune I mean systemic and maybe the worst disease out there to live with and all the secondary issues that it causes in our bodies. I’m not here to preach but I have learned so much about my soul and God that I would take this on again to gain that insite and awakening. That said I wish there would have been an easier way to find god. ha ha. No what I have experienced took away any fear of dying. So I suffer but no fear at all. I mean no fear at all. God Bless
This is a very interesting debate.
I would just like to add that 3 of my children became ill with severe ME in the eighties, after showing signs of improvement from 2000 till 2005 they all started to develop other conditions and diseases.
Non of the consultants they encountered ever wanted to hear or read about their history with ME When their illnesses and conditions were finally diagnosed they simply removed references to ME from all their communications or notes, wiping out 20+years of there suffering and history at a stroke. This also put them at risk in hospital as no treatment ever took into account their ME or history.
Medical staff not seeing severe patients is not the explanation for the lack of acknowledgement because when the do see them (no matter how ill they are) they don’t see them as severely ill even when dieing.
This happened to Emily Collingridge who died here in the UK a couple of years ago in hospital at the age of 33. Even as she lay dieing her consultants were in denial and stopped the kindly professor (who had been caring for her, from seeing her) they tried to send her home but were stopped by a nurse who told them they could not do so as Emily could no longer be fed in any way.
Its a kind of herd thing people only see what they are told to see, it has become policy to deny ME, anyone who breaks that risks their career and reputation.
The crux of the matter is that ME is not validated as a serious disease but only as a psychological problem
I think ME is not even “validated” as a psychological problem because then I think it would get money. Actually I think it is probably thought of as a psychological problem but a minor one. Whatever it is thought of – it has to be “minor” to get the funding it does.
Cort Johnson says:
July 31, 2015 at 8:46 am
“I sent this email to the National Organization of Women:
Did you know that the National Institutes of Health has relegated a group of prevalent and predominantly female disorders to the bottom of its funding pile? These disorders affect tens of millions of women, often cause disability, produce high rates of fatigue and pain and cost the US economy of upwards of 100 billion dollars a year in economic losses yet the NIH, with its $30 billion budget spends about $10 million a year on each – far lower than their economic impact suggests it should.
They are the last great neglected set of women’s disorders. They include migraine, fibromyalgia, chronic fatigue syndrome, interstitial cystitis, endometriosis, vulvodynia and others. They often affect women’s reproductive systems.
It’s a crime so many women (and some men) have to suffer from these disorders because the NIH – a mostly male run organization (the directors of the Institutes responsible for most of these disorders are all men) – is not interested in funding them. Either undeclared prejudices (that they effect whiny, hysterical women) or an unwillingness to fund diseases that cause pain and fatigue but not death (or both) appear to be behind this neglect.
NOW could impact the lives of possibly 100 million by taking on this issue. Find out more here:
Find out more here: http://www.cortjohnson.org/blog/2015/07/29/nih-blindspot-reason-mecfs-fibromyalgia-poor-funding/
Thanks for your time.”
Great. We should all contribute to this, involving the National Organization of Women and other central players in this field.
Thanks Cort for your fantastic work.
The more people that get in touch with them – the better chance we have of them responding.
You can find their contact form here – http://now.org/about/contact-us/
Who else can we contact? I tried Oprah – but couldn’t find a place to send a request in.
I think Laura Hillenbrand would be an eloquent spokesperson for CFS-ME. I’m not sure why she hasn’t taken this on.
Yes she would be. She would be a fantastic spokesperson but she’s not interested in doing or being that. Perhaps in the future.
How do we know she hasn’t? Even if media respond to her, she has little control over what gets covered or published; there’s a slew of editors along the way, each responding to internal organizational parameters that may, for us, skew the story, or leave it half-told, or worse.
Before becoming disabled by this illness I worked in public relations and marketing. PR works best when we meet not just our own goals but also those very different priorities of the people we’re pitching to. Someone with Laura Hillenbrand’s profile may ask (NOW, Oprah, other media, government agencies, etc.), but those people and organizations may have other priorities. Famous people as well as media organizations get dozens–hundreds!–of requests a day to jump on board a cause, but until someone famous for something else, and in the prime of their life/career falls ill, or the sister or brother of a Meryl Streep or Dr. Oz, it will be hard to get their attention. Does anyone in our patient or advocate community know someone at NOW or Oprah magazine, or one of her good friends like Deeprak Chopra? They might be more successful in making a request on our behalf.
“Does anyone in our patient or advocate community know someone at NOW or Oprah magazine, or one of her good friends like Deeprak Chopra? They might be more successful in making a request on our behalf.”
I agree that this is what we would need. As big as our community is it shouldn’t be impossible. How can we get the word out?
Laura has been asked. I create a piece that I hoped would get into the media called “Why Laura Hillenbrand can’t get any help” when the movie came out.
I asked her for a few quotes. She refused to provide any saying she wanted to focus on family.. She’s just not at all interested in helping out in that way. When she has a book or a movie come out – she’ll talk about ME/CFS. Otherwise apparently not.
I find it baffling given the effect it’s had on her life. She has contributed money to the Solve ME/CFS Initiative and she did one event that I can remember with them a decade or so ago.
She also, with Gary Sinese created a charitable foundation for veterans during the Iraqi war! She was a guest of President Bush at a prominent event during the war.Did she ever mention ME/CFS funding to him? I have no idea. If she did it had no effect.
I had a feeling she didn’t want to get involved. I feel sad about this, and baffled. But there’s not much we can do about it.
First off she did not at all do justice to the disease in the first place. Second we don’t even know that she has the disease. Again it’s to easy to say things without biomarkers to confirm the disease. There are so many potential issues that can cause certain symptomes. It was also obvious to me from interview she was not passionate about helping. We must start concentrating on certain biomarkers in order to identify the disease.
It’s disappointing to hear of her response to you request, Cort, for I appreciate so much your work and perspective and the goals you have/had for that particular piece, and yet I respect that Laura has to make difficult choices about how to spend her limited cognitive abilities and energy because of this illness. We all resent it when we sense that others close to us as well as casual acquaintances or society in general judge us for making choices they think we should make differently. I must offer her the same equanimity I hope for myself.
I don’t begrudge Laura for wanting to make something of her life outside of our illness, to even focus on the suffering of another group and trying to help them, to sing more than one song in this world. I sure wish that for me, for all of us. Any spokesperson with a high profile will have to be that, someone proven in the world outside of our illness in order to be believed about what we suffer. All of us do well for ourselves and our healing path to sometimes set aside the advocacy work–even though the need has not diminished!–in order to just be, to just live. This dilemma is one of the hardest parts of this illness, making peace with what is while working for change.
Your drive and perspective has moved our cause forward exponentially, Cort, and I trust how you build that momentum, story by story; I wish your building every success. I appreciate that you embrace the path you do when you would prefer a different one, and I don’t mean to sound critical of it.
Excellent, Cort! I am bookmarking this article for later reference.
🙂
Nice summary Cort. NIH has no excuse for low funding nor assigning this illness where they have within their organization. It is about the incidents of ME/CFS being more associated with women. Just a review of any history will reveal women have had to become involved in social protest movements to achieve most of the rights they have today in highly advanced countries. It is evident that in less advanced countries women have fewer, little or no rights. Addressing our concern with Congress is likely going to fall on deaf ears (mainly men), unless we suddenly start dropping dead. This is a form of discrimination pure and simple. Wish I had the energy and know how to file a case of discrimination, first of all for assigning it to “The Office for Research on Womens Health”, which is a tactic to stall and not take research very far. If we could combine the latest in technology, with what is being learned in multiple areas of medicine, cancer, autoimmune, epigenetic, genetics relating to the immune system, including what comes of new research involving connection of lymphatic systems being tied to the brain and central nervous system, I believe we would get somewhere rather soon. Sounds silly and it may be, but I wrote the President once after he was a year or two into his office and he wrote me back. Yep, that is silly, he is drowning in issues. I vaguely remember he has promoted a Faster Cures program but do not know a lot about it.
The President may be interested helping in cases where groups have not gotten a fair shot. He strongly supported gays in the military and assigned a high aid to look into ME/CFS’s case at the NIH. I think he is sensitive to these issues.
He is a possibility! I think we give up too early. We’ve got to try as many angles as we can.
I got Sjogren’s, Crohn’s, and interstitial cystitis before I got CFS. I saw twenty six doctors over a three year period trying to get a dx for i.c. Finally, I borrowed a friend’s card and snuck into the Harvard Medical School Countway Library. I had no medical background but I was an English major and felt answers were in books. This was ’78. I read for a year and found the right article (there were only nine!) Urology texts said that it was caused by psychiatric problems burning away the bladder lining. There was ZERO research even though it was discovered in 1918. This disease was pure torture; I lost my career, my husband and my child bearing years. I went into remission the year I hit menopause and the same year I got CFS. It was worse than CFS for me.
A few years ago a doctor who knew me said I did the impossible by getting a dx when I did. The Interstitial Cystitis Association was started by Vicki Ratner, a surgical resident at Beth Israel Hospital in Manhattan. She was told to quit medical school and get married when she couldn’t get a dx. She read for six months and she was a SURGEON.
There is now a lot of awareness of interstitial cystitis by physicians. Women and men (10%) are getting diagnosed. That was one of the first major goals of the organization. Treatment has evolved.
Like CFS, it is a new disease (1918 doesn’t matter; it went undiagnosed.) The first doctor who treated me thought he’d find good treatment and a cure. He burnt out.
A major problem is it is a female bladder disease that fell into a male surgical specialty. There were NO female urologists when I got i.c. There are a few now.
CFS has a similar problem: first we saw i.d. docs; then neuro’s, etc. We don’t belong to anyone. This is a major problem when it comes to research.
I mentioned in another blog how the Crohn’s and Colitis Foundation eventually became successful. Cort was impressed by their NIH funding. Ulcerative colitis was described over a hundred years ago and Crohn’s in a breakthrough paper in 1938. But it didn’t get funding until the late ’70’s and didn’t have real success until the late nineties.
When I got CFS twenty two years ago the doctors I was seeing for my other problems questioned the disease. I was crushed. These were doctors I was very close to. They all came around within three years. But they all want more research in their areas.
We don’t belong to anyone; we don’t have a medical discipline to fight for us. Or to make a name in the academic research community. Doctors cannot be totally altruistic today; they have to get grants to keep going.
Andrea, you have an important point. Even fibromyalgia has a specialty – Rheumtology. Maybe this is why they have several drugs marketed for fibro. But CFS-ME is an illness without a specialty.
This disease is neuro immune . All the top cfs docs are looking at this in that light now. Even Doc peterson admits it it neuro immune disease now. They just can’t find auto antibodies yet. With more money and better research they will. This has always been in the famliy of those type of disorders. It may be a little different than ms or systemic lupus ect. but still in same ball park. I think once we as a community can call it what it is then we can demand more money in research. The secondary issues are all issues people see in systemic autto immune disease. This disease happens to be the worst one out there unfortunatly.
I hope you;’re right Jimmy!
Really fascinating Andrea – thanks for all the background.
This “Urology texts said that it was caused by psychiatric problems burning away the bladder lining.” really, really shows how embedded even a really weird idea can get in medicine. It reminds me of reading that the contortions of MS were believed to be psychiatric as well.
We can be great deluders!
Question for us all. If some one pointed a gun at your head and you had 10 seconds to tell them what type of disorder you thought you had what would you say? well we do. my answer without wavering would be back to the start neuro immune. All the other issues mitochondrial ect are part of this cascade that is secondary. Again if you look at stanford, doc peterson, omi ect they all think this now. There has really never been a doubt about this to me. So what is your 10 second answer all?
It is a neuro-immune disorder. But still, what specialty do we look to? Neurology? Infectious Disease doctors? Other?
Dear Andra,
Cudos for you for having the resilience to do your own research. I have never seen a CFS/ME/SEID specialist but have stayed abreast with the research largely thru Cort’s blogs and looking further. I will go to a PCP and show the research and request that a test is done and more than often they comply. I had a lowgrade fever every day for my first 20 years since my diagnosis which I received quickly and thankfully to an up-to-date PCP in 1994. The fever finally relented a year ago but I still have as much fatigue as ever. I’m taking Valycte for the family of viruses that it covers per Dr. Montoya’s protocol at Stanford. It takes a good 6 months to perceive a change and I’m getting close to that mark. My disease has progressed and changed over the years in subtle but noticeable ways. I’ve cleared as much stress out of my life as humanly possible and eliminated toxic individuals from my life and my current pattern is close to 3 days of minimal energy and then 4 days of severe crash.
Yes, we need our own specialty. We need out of the Office of Women’s Affairs. We need Dr. Unger to complete the teaching modules for medical university students and the continuing ed for current practitioners. We need to know what our disease will be known as (?ME?SEID) And, of course, we need more funding. This is a possible turning point for us in the area of funding and we need to push as hard as possible in this arena through the rest of this year.
Cort, your most recent articles have been absolutely phenomenal in the realm of showing real stats on where we stand and offering up valid reasons why. Thank you for your ongoing dedication. I hope you continue to receive adequate contributions to stay on your feet and can continue the work you’re doing. Hugs to all of you. marcie
I would say my impression is, somewhat similar to what I think Cort may have said in the past, that we all arrived at similar symptoms through various causal stimuli. My take is that Fibro is caused by psychological and/ or physical trauma;I’m pretty sure that fMRI studies of FM and PTSD show similarities. Perhaps medical insults like Epstein-Barr made some of us vulnerable, and perhaps subtypes of these disorders in some people act more like immune disorders than others. I suspect neuro hormonal/ circadian involvement because my FM symptoms declines greatly virtually every night about 11PM, making me not want to go to bed. These varied etiologies and difficult-to-assess manifestations on a few diagnostic tests mean no one wants to ” own” us…rheumatologists have told me they hate to treat this disorder. I can’t imagine infectious disease folks dropping HIV and Hep to treat a disorder with no apparent infectious association. Neurologists…who wants to see a neurologist LOL and they don’t want to see us. Get an LP fishing for weird stuff in CS fluid…not me.
My neighbor with FM found an ” integrative medicine” ( sorry, always wants to make me hold my check book and run in opposite direction) and got her first IV cocktail of vits and Mg. She feels great and wants me to sign up. Eight initial vials of blood and maybe $800. Two month wait period. I told her I watch her progress the next few weeks and I’ll consider. Until we have some solid easily measured bio markers of some type and get “owned” by some conventional specialty who knows they can successfully treat us, we will be seeking medical outliers who have reported clinical results but minimal clinical backup research.
The Government will never provide funding for research into Fibromyalgia, chronic fatigue and invisible mental and physical neurological disorders/disabilities because research will reveal the cause.
The US military has been granted government consent in the US/Canada and abroad in other countries to spray our skies with military biological weapon chemicals, genetically altered bacteria, virus, fungi and even the anti-psychotic drug lithium on unsuspecting men, women, children without the informed prior consent.