“Sometimes, unhelpful ideologies get in the way”
Edward Hadas, an economic journalist, recently took on the question of why Chronic Fatigue Syndrome (ME/CFS) is funded so poorly in a Reuters piece “Market Failure Can Be A Sign of Fatigue” . He notes that while Chronic Fatigue Syndrome is a mystery to the medical establishment the bigger mystery is why a relatively common disease causing high rates of disability and economic losses to society gets almost no funding.
The invisible hand of the marketplace is not working with ME/CFS – the question is why?
You have a glaring need, you have money spilling out of the system every year through lost productivity, and yet the medical ‘markets’ that would ordinarily respond to those needs, i.e. the drug manufacturers and medical research funders, have ignored it.
“More crassly, this is a reasonably common disease that attacks many people in the prime of life.”
Hadas doesn’t get it. Any relatively common disorder that strikes people early in their lives is a potential gold mine for drug companies. Drug companies should be frothing at the mouth at the opportunity to lock up patients for decades with their expensive drugs. The research community should be responding to a relatively common and debilitating condition but neither are. Neither potential profits or societal effects appear to matter.
Treatments or vaccines for CFS are likely to turn out to cost less than the value of the labour that is currently lost to the disease.
Contrast the societal benefits of drugs that could return a million or so patients to productivity for decades with the benefits of drugs that prolong the lives of cancer patients for a couple of months. No dollars are being devoted to the first type of drug, while hundreds of millions of dollars are being devoted to the second. Adam Smith’s ‘invisible hand’ of the markets is not working.
The relatively early age at which people often get ME/CFS could mean big profits for decades for drug companies – so why haven’t they shown up?
The fact that ME/CFS does not ordinarily kill people, the lack of a celebrity spokesperson, and (of course) conspiracies have all been proposed to explain this medical market failure, but Hadas suggests that ME/CFS’s big problem is that it doesn’t fit the one pathogen-one illness model of infectious disease.
The medical establishment knows that the old model of infection doesn’t work, but it hasn’t evolved the tools or the gumption to build a newer, more complex model.
That really hurts because in the research-drug development tango research comes first. You can’t aim a drug at a disorder until you know what to aim it at; i.e. researchers need to elucidate the causes of ME/CFS before drug developers will produce drugs for it. Having ME/CFS stuck at the very bottom of NIH funding barrel for decades means few treatment options and little drug development. The federal funders have to do their part first – and they haven’t.
Low research funding makes it more difficult for drug company to develop drugs for ME/CFS
Hadas does not note one part of the market that has responded: the small private research foundations which may spend more on ME/CFS every year than the federal government. A ratio of private/public spending on disorders would probably highlight a variety of disorders for which the traditional ‘medical markets’ have failed. “The Failure of the Medical Markets in ME/CFS” would be a fascinating PhD dissertation.
The leading researchers do see the disease as a complex and multi-system failure. Their work could lead to a medical, intellectual and economic triumph.
Hadas is hopeful that some members of medical establishment are finally taking note, and if they are given the funding he predicts their work will be ultimately be both a medical and economic triumph – not just for ME/CFS but for other debilitating diseases as well. Indeed, the fact that the economic failure of the market to provide for people with Chronic Fatigue Syndrome is being examined is a step forward.
I believe Hadas’s proposal that ME/CFS reflects a new model of disease the medical establishment hasn’t caught up with is a good one, but one which is missing a few factors.
I believe that gender is just one of several issues that keeps ME/CFS from being taken seriously.
I suggest that ME/CFS is not alone, but is one of a group of disorders that have largely been ignored by the medical establishment. All are relative new (to medical research), are common, have high rates of disability, cause huge economic and medical costs (but not death), and are dominated by a group of patients – females – who have traditionally been poorly served by the medical establishment.
They are disorders like ME/CFS and Fibromyalgia, irritable bowel syndrome, TMJ and interstitial cystitis. They constitute what may be the last great fight for equal rights/funding in the medical establishment for women.
Coming up shortly we address one of the most glaring failures of the medical markets – drug development – and push the FDA to do more.
- Check out Hadas’ intriguing Reuters article “Market Failure Can Be A Sign of Fatigue”
Why do you think the ‘medical markets’ haven’t responded to either the need or opportunity that ME/CFS represents?
I suspect there are many reasons–it has been tagged as a disease of middle aged neurotic women, witness it being placed in the women’s disease section of NIH (is MS there? is RA there?) as one way of shunting it off centre; in addition, there may be intelligent speculation that huge forces may be involved in its genesis–vaccines, RF (recent papers by such as Martin Pall are making this more likely by the day)–and disability insurance companies don’t want to pay for it. There will of course be other “reasons” working behind the scenes too. So best leave it alone…
Chris
I think the first one reason you point out and the fact that it rarely kills people is a big one. The medical establishment need to shift and take note of diseases that are disabling but aren’t usually life-threatening…These diseases may be amongst the biggest headaches for the medical profession because they are common and are difficult to treat. I’m sure doctors would LOVE to have a better handle on them.
We just aren’t “sexy” enough for support – NOT just an American/USA issue, but this is in fact a GLOBAL issue! Fibromyalgia, ME/CFS sufferers are ninety percent women; we tend to be late thirties to middle-aged and a whole lot of us (due to overlapping symptoms) are either over-weight or too thin…as I say: not sexy enough.
The deaths, if anyone cares to count them, are related to those of us who have committed suicide. You see, being in pain is exhausting to the body, meds not covered or even prescribed (women have it all in their heads), and being unrecognized by the Medical world and those you love…is a death sentence waiting to happen.
Let’s just hope it isnt genetic as well.
Cheers from Ontario,Canada
cheers Back At Ya From The Same. I Couldn’t Agree More. I Am One Of The Lucky, Or Perhaps The Unlucky Ones. My Family Doesn’t Seem To Get Overweight. I Had Suffered For Years And Spent Many Of Them On The Couch But Still Look Healthy. I Lost My Husband Of 14 Years Because He Neither Understood Nor Believed I Had Anything Significant Wrong With Me. Neither Did All The FriendS I Lost When He Left, Sighting My Laziness Etc. To Them. I Spent Years Trying To Even Get Any Pain Relief Because I Didn’t Look Like I Was Dying. Meanwhile, Inside I Felt Like An Eighty Year Old At Thirty Five. My Severely Disabled Son Gets Money, Medicine, Special ProgrammeS, Everything A Disabled Person Will Need (For Which I amTruly Grateful) But People definately Do Not Take FM OR CFS As A Serious disability.
Surprising that this ‘market failure’ hasn’t been noted or commented on before but kudos to Hadas for doing so.
The argument that ‘it doesn’t kill’ only goes so far. Most chronic diseases don’t kill directly but do place a chronic burden on health providers and welfare (let’s just leave aside personal suffering which doesn’t appear to carry much weight). What are the economic costs via lost productivity I wonder of male pattern baldness which receives much more funding than ME/CFS bearing in mind that market failure is supposed to be the primary justification for state intervention.
Is wounded male pride really that costly to nations?
I’ve always said that the reason that ME is viewed and treated psychologically, is that it’s cheaper to blame the patient for having abnormal illness beliefs and for behavioural habits leading to deconditioning, for which you might get offered CBT and GET/GAT…but most people self-manage. No need to fund biomedical research, expensive diagnostics, expensive health care; immune modulators, antivirals, other costly medication (some intravenous), along with the training and continued care. No need for lifelong insurance payouts and social security (without as many questions), for a permanent disease. GET/GAT follows a rehabilitation model, that unfortunately doesn’t work for people with ME and makes them worse.
This turns this on its head and I wouldn’t mind IF the movers and the shakers read this and see the economic benefits of funding research and treatment for ME, not just for us, but for knowledge on how to treat people with other illnesses, so that they go back to work or even how to prevent other neurological and immunological illnesses in the first place.
It’s definitely cheaper for the insurance companies but the economic burden of having a large number of ill people out of the work force (or not in it completely) and who are seeing many doctors fruitlessly has got to be really high for our medical system and the nation as a whole. If you add all those disorders together – it’s a lot of people.
Drop in the bucket compared to obesity, diabetes, heart disease, etc.
I agree. It’s very short-sighted of government to use the psychosocial model and rehabilitation focused GET (which doesn’t work for people with ME and can make them worse). It’s cheaper initially, but the longterm cost, with the almost inevitable further ill health, that comes with not being treated correctly, puts pressure on state and private provision.
It would surely be better to train doctors to diagnose quickly and accurately, develop diagnostics and treat patients with targetted treatments that actually work to make a patient well and, dare I say it, more productive. That’s what the global system wants…after all.
It may be cheaper for the insurance companies for those that go along with the psychiatry referral and stop there. But I have to wonder if it really is cheaper for them as I believe many of us don’t stop there. As I’ve been told, this is a diagnosis of exclusion and I personally have cost my insurance company a whole lot of money by going through all the expensive tests and seeing multiple specialists and doctors over the past 5 years, before and after my diagnosis, trying to gather as much data as possible. I do see a psychiatrist as well, trying to cooperate with what my primary care doctor wants me to do as well as to get meds to help me cope with “life.” I also go to a pain clinic to help me cope and alleviate some of the pain.
Also, I’m not normally a conspiracy theory type of person, but I have been wondering if government and pharmaceutical companies etc. know more than they let on. I’ve been wondering how they don’t see how much it is costing our economy etc. They are intelligent people, generally, and it seems they don’t want to know or they don’t want us to know. Either they really do not believe this exists or they know what’s causing it and somehow they’re responsible and are worried about liability. It could be anything from vaccines to pesticides. As a precaution, I do not accept vaccines anymore and plan to go as organic as possible with the food my family and I are consuming, as well as only drinking spring water. It is difficult in this day and age to find “pure” food and water but it’s worth a try.
The thing is Wendy is that I don’t think they take account of economy costs at all. A lot of diseases are entrenched in the NIH – they are basically guaranteed funding for decades – we’ve never gotten entrenched – we don’t powerful backers – we’re ensconced in a part of the NIH with very little money. I just don’t think the NIH even remotely considers need or economic costs in their calculations. I think programs get started and then have lives of their own.
sexism, part of which is to label any complaint affecting women as psychiatric.
The market has stepped in – there are many people making a good living out of selling treatments and supplements
Good point – the alternative health market HAS responded to the efforts of people with ME/CFS and FM to get well. I imagine that the alternative health market does very well with disorders that traditional medicine and pharmaceutical drugs don’t do well with – such as ME/CFS.
Very good point. Not so much big business, but small businesses do very well out of illnesses that have no treatments. They even offer alternative explanations, which some people feel satisified with…even if temporarily. So many patients spend thousands of pounds/dollars on therapies, supplements, special diets, natural products, mobility aids and so on. That would be a loss to some businesses who specialise in these illnesses.
I think it needs a specific bio marker before any big federal funding comes along…
That’s a chicken and the egg problem; a biomarker should spark more funding but how do you get a biomarker without much research funding (????)
I don’t think it’s as female dominated as 90%, there are a lot of guys out there with cfs. For some reason don’t spend a lot of time on forums etc although many other guys give up on docs and pursue treatments themselves.
Also we have biomarkers, nk function being the big one, rnase l, and different cytokine tests. Also the 2 day exercise test. A combination of these with the CCC would work well.
Treatment can be design firstly at relieving symptoms, secondly at treating active infections and also trying to improve immune function. We need big pharma to help improve these as well as make available drugs indicated for cfs/me.
Can be done they just have to do it.
What about that BDNF? that you just reported about, Cort? I think the small study showed we and MS patients have 25% of the normal amount. If that pans out in a larger study that could be an impressive biomarker. There’s also cerebral hypoperfusion seen on SPECT scans in many patients that doesn’t seem to get much attention. It could contribute to dementia and possibly Alzheimer’s disease. I’m impressed by that. Why isn’t the medical establishment?
Hopefully they will be. Each significant finding must erode away at whatever beliefs they have that allow them to treat ME/CFS like its the common cold.
Well done. Going to save your sum up, first thing, for my Doctor!
Since I have always worked in male-dominated areas I can think of many instances of male colleagues who have been felled by CFS. These are highly educated, serious people who have been gravely wounded or shut down. I am very insulted by the imputation that we are all malingering or that only hysterical women or spoiled yuppies get this. CFS is quite a torment, aside from the economic cost.
It sounds like Dr. Pridgen is on the right track – I look forward to his trials with CFS patients.
One of the primary struggles I’ve had with CFS/ME for the past 25 years is the sense of worthlessness that comes from not being able to work in the current structure of the working world. Tying health insurance to one’s ability to show up for a 40-hour week is a pretty rigid structure. Sometimes I have been able to perform within this framework for months at a time, and other times I’ve been too crashed for several years to show up even one day a week.
I think this inability to show up every day for 8 hours a day is a lot of what hampers us not only as persons with CFS/ME, but also as employers, insurers, researchers, and family / friends. We need to find a way to include people outside of this structure. We become “forgotten” because we cannot show up “reliably.”
This is not only true of people with CFS/ME. It is also true of people who have been unemployed for a long time and who have not been able to re-educate themselves since the 2008 crash. Workers are easily replaced and former workers become invisible in the interests of doing business. I think it’s a socio-economic issue.
It’s a huge challenge to change to a different frame of thinking when it comes to doing business, and it’s an artificial concept that we have super- imposed on the natural world. I have found ways to manage my own poor health in a more natural way, going with the flow of the natural world, following the sleep dictates of my body, consulting with naturopaths and alternative practitioners because mainstream medicine has nothing to offer me.
I had a discussion with a compounding pharmacist about this very topic yesterday. Any drug that is not promoted to physicians by drug companies is likely to be ignored, no matter how effective. My physician knew nothing about LDN, for example. It took 4 months for me to find someone who would prescribe it for me so that I could even give it a try.
People don’t like change until we are forced to it. We could take the lessons from CFS/ME as an incentive to promote such change, but we as a society will probably resist that as much or more than we resist changes to reduce global warming. The true forward thinkers are laughed at or scoffed or even discredited. Once a few people see the effectiveness behind their ideas and start to promote them, then such thoughts become more widely considered. After a while they are adopted into common practice, and eventually they become accepted as the way things have always been done.
I think he got it exactly right.
He is not saying the ME is the only disease captured in this dilemma but is examining the problem of complex diseases through the lens of ME. And based on what I saw in Pharma over 30 years, I think he’s exactly right about the inability of a relatively simple biological approach to R&D and medicine in general – whether it be one bug, one gene or even one biological pathway – to solve the challenges of complex diseases. Pharma itself has developed extensive networks in the last 10 years to deepen the knowledge of the biology of diseases but it’s a very different model. Being common doesn’t make it easy.
The other way that he got it right is that the lack of such a biological explanation early on left this disease subject to being overtaken by the psychological crowd. And that had its own impact with the broadening of definitions and the recasting of this disease as a psychological illness, which for some researchers is equivalent to nothing more than 6 months of medically unexplained fatigue that encompasses any number of biologically unrelated conditions including psychiatric disorder. Is it any wonder that even today, one of our premier medical clinics states that CFS patients who *think* their disease is organic have a poorer prognosis.
To your point, between these factors and the lack of NIH funding, drug developers/pharma have nothing in which to make an investment, especially when there are other complex diseases with a better biological foundation.
There are undoubtedly a number of other factors as Hadas alludes to – gender politics, lack of being ‘owned” by a medical society, etc – but the two that he discusses are pretty high up there in my opinion
Mary would know – by the way – she used to work for a pharmaceutical company 🙂
I know I’m “preaching to the choir” here, but this is just so beyond frustrating! My 30 year old son Whitney could certainly tell anyone who would listen, if he had enough energy to talk, that it’s not just a disease of middle aged women! He’s been lying in bed trying to get through this, unable to do ANYTHING except listen to music sometimes, for YEARS. Last night he wrote a little note “I don’t know how I can keep going like this”. He was a very productive fine arts photographer, excited about life, and CFS/ME gradually took him down(www.whitneydafoe.com).
And my husband, Ron Davis, is literally chomping at the bit to gear up a huge research effort, which I KNOW would find some answers to this horrible disease, but doesn’t have enough money and knows that if he wrote a grant it wouldn’t get funded (www.cfsresearchcenter.org). It’s so ridiculous that they think they need a biomarker before funding will happen! How are they supposed to find a biomarker with NO FUNDING?!
This is the most ridiculous thing I’ve ever heard of or imagined, and it shatters any idea I’ve ever had of what America is about, of fairness, of caring for suffering people, of any sense of what the United States (among others) purports to be, of the Hippocratic Oath, of the mission of public funding of science and medicine.
I feel angry, sad, betrayed, and even guilty because I had no idea and was part of the ignorance before my son got this, in spite of having a couple of friends who have it. I was part of the problem then too. But now I KNOW without one shadow of a doubt: this is an illness, it’s not psychological, and it’s the most profoundly unfair situation I could ever imagine that there is so little effort in the medical community to solve it and help all these suffering people.
A good friend of ours, a pretty high ranking doctor at Stanford, just argued with me that we should think about depression and anti depressants and CBT. WTH! I tried to explain that it’s like telling a dying cancer patient that their problem is depression and that anti depressants will help. I tried to explain that anti depressants and CBT might help someone cope with this DISEASE, IF THEY COULD TALK, but he wasn’t having it. So depressing. OK, so I’m sorry to go on like this, but it’s so awful and ridiculous. End of rant.
Thank you to everyone who tries to do something about this.
And love and prayers to all those who suffer.
Janet, no need to apologize for the rant. We are STUCK in this mire of medicine, money, and politics. And most of us don’t have the energy to jump into this huge fight. We send our best to your family and Whitney, who, like so many of us, is completely devastated by this disease. Terribly frustrating and sad. Thank you to your husband for all his efforts.
What a wonderful mother you are, Janet (:
This recognition – “it shatters any idea I’ve ever had of what America is about, of fairness, of caring for suffering people, of any sense of what the United States (among others) purports to be, of the Hippocratic Oath, of the mission of public funding of science and medicine. I feel angry, sad, betrayed” … was really disillusioning for me.
I thought SURELY if people were ill the federal govt would be working on it…but it turns out that they play favorites just like anyone else does. There’s no one in federal government apparently that is in charge of seeing that ‘need’ plays a role in allocating funding. There really should be someone who can say – “well, there’s a million sick people that we’re ignoring” and we’re responsible for their health – we state that in our objectives – and therefore we’re obligated to help them out.
Maybe that’s Fauci’s job. Dr. Lipkin seems to think Fauci has no power to even add a couple of million of dollars of research funding for ME/CFS. That seems incredible.
And I doubt that it’s true. IMHO. But he’d have to take money from something that is already being funded. And do just what you suggest – make some decisions based upon need.
“It’s so ridiculous that they think they need a biomarker before funding will happen! How are they supposed to find a biomarker with NO FUNDING?!”
Exactly! How do you even get to step one with no funding? Unless you get incredibly lucky – it’s impossible. Would they expect progress in multiple sclerosis if they gave it $6 million/year? Of course not!
I will note thought that private funding has increased enormously and the addition of big names like Ian Lipkin and Ron Davis must be setting the stage for bigger things. When those guys talk at least some people listen and people in high places must be thinking a bit more about ME/CFS these days. .
As a mother of someone who had CFS for 5 years and also as a psychotherapist who has a number of clients who have been told their physical illnesses are psychological, I am deeply saddened that we are still in this awful place of a very real disease treated so badly or not at all. We were so incredibly lucky and deeply grateful that our daughter got sick at just the right time and the right place where Dr. Peterson sent her to Belgium for Ampligen for a year. She is fully well and very active in her life. And I can promise you that no amount of anti-depressants or CBT would have made ANY difference. It was the antiviral that made the difference and it breaks my heart that it is not available to more people STILL. It’s been 15 years since she returned from Brussels. And it’s still not available here with no other alternative. I’ve been told the clinic in Brussels closed. I think, but I’m not sure that the doctor there either retired or died.
I have only recently started to look at the research again, since I now have a client who may have CFS. I’m appalled that we don’t seem to be any further along. Why aren’t researchers studying the people who HAVE gotten well? All the people in my daughter’s treatment group were either completely cured, as she was, or at least were dramatically better, and remain so. I know one doctor told my client that the reason she would not be getting Ampligen is because they found that once patients got off it, they relapsed. It’s not true!!! Maybe that is only a subset, but why isn’t anyone testing those who have stayed well to find out?
One of the patients in her group sounds like your son, Janet. When we first met her in Brussels she had been on Ampligen for I think 6 months and she was still very sick. She had to be in a dark room, could barely have the energy to eat and couldn’t talk very long because of fatigue. She stayed on Ampligen longer than my daughter, but she and my daughter are still in touch. This woman is now the step mother of 3 very active boys and while she has never regained the strength she had prior, she is able to have a good life! It’s more than tragic, I actually feel it’s criminal that so many like your son are languishing with no real treatment!
I do want people to know that there is hope somewhere. I did make an appeal to the FDA during an open hearing on Ampligen about the successes my daughter and her friends in Brussels had. I don’t know why the drug isn’t available. I will continue to push for it. It’s not an easy drug to take. But it still brings me to tears when I think of seeing her face when I flew over to bring her home. She had been doing better so we hadn’t flown over for about 6 months, although we had daily phone calls. But when I got off the plane and she was picking me up, I just started crying. She had color in her checks, she had energy in her step, she had light back in her eyes! I want that for every mother, father, spouse, child who has a relative with CFS.
well spoken 🙂
x
janet, I think it’s great what you and your husband are doing for your son. Fortunately the attitude of your doctor friend is becoming less common and is on its way out, thanks to the efforts of people like you!
I believe the CDC’s early characterization of it as hysteria labeled the syndrome as not meriting further research or funding. Also, the poor naming process has further demeaned the disease and those of us who suffer from it. Curious as to how the evolution and acceptance of other diseases (e.g., MS, myasthenia gravis) differs from the ME/CFS process.
I think it surely must play a role – but fibromyalgia – which has a pretty darn good name – actually gets LESS federal funding per person ill than ME/CFS. The name is not helpful but I think other factors are more important.
In the 19th century MS was sometimes diagnosed as hysteria or neurosyphilis. Heart attacks were dismissed. There was no way to objectively prove anything had happened. I seem to remember when fibromyalgia was scorned since it caused pain of unknown origin – in women. Now it’s a star in the TV advertising world. Maybe there’s hope for ME/CFS, but I don’t know if we’ll see change in our lifetime.
I think we will! I really do 🙂
Personally, I think the answer screams itself out from this article. What if no pharmaceutical intervention could even be imagined which could alleviate the symptoms of ME/CFS and FM? And what if the costs of admitting they are real diseases – let alone providing a genuine cure – are indeed far, far more expensive than the current losses?
I know it’s a fine point, but one that many women are sensitive to:
There is a problem with characterizing CFS as “not just a woman’s disease” in order to validate it’s legitimacy. It shores up the importance of diseases that afflict those in the power position while reinforcing the habit of ignoring the diseases of minorities or the powerless. The conclusion one is left with is: “OK, NOW it’s real and deserves to be addressed seriously and powerfully.”
I know that no one who used that wording meant to imply the above.
I don’t agree with the theory presented here, although I appreciate the author asking this very important question. However, the answer is hidden in plain sight – The medical establishment has no interests in developing treatments for CFS, because they are already making tens of billions prescribing us antidepressants, pain pills, amphetamines (yes, I actually once had a doctor that recommended this!), sleeping pills, etc. etc. etc.
What reason is there to invest in developing any new medications when they’re successfully sucking the docs into pushing all these other dangerous and ineffective treatments on us?
Indeed, we need to invoke the “dollar” in all its market force in addition to our other initiatives, publicly and insistently!
It is a good opinion article, glad it was written.
I do not think that the over-half women aspect of this disease is relevant to it being ignored, or to treating it. My late husband also had this disease, so I thought a lot about the gender issue when he was alive. It made me think even more men had it than were diagnosed, because the effects of the disease do, in a complicated way, hit a guy even worse in the personal image than it hits a woman. There were long arguments in our long-ago support group on that, when the group had both women and men in it. Listening to my husband talk about that need for guys to be tough, it began to sink in, though it is really a small difference as this disease is an enormous challenge to anyone’s self image, sense of control in the world, and like that.
The way the shrinks took the disease away from regular doctors and then did absolutely nothing to treat anyone — that slick trick seems to be the real issue that gums up the works for us. The appeal of the Wessely views to both sides is enormous. The regular doctors are off the hook for dealing with the patients with no disrepute to their names, and the shrinks do nothing, except possibly make a person worse, and who cares, you are a psych patient! Shrinks make mistakes with lots of them and no one goes after shrinks with malpractice suits. To go full circle, when I saw a shrink early on, he said, it is physical, please see a regular doctor.
Look at the patients locked up for no good reason — shrinks are immune.
Does that mean our real problem is breaking the hold of the shrinks?
Guess I am not full of good cheer this morning. Mabye someday the vicious circle will be broken.
Sarah
In my opinion, the three largest reasons–
-we don’t die from it
-it’s associated with women in the minds of dictors and the oublic
-we don’t have a celebrity who’s been willing to stand up and shout, ‘do domething for these people’
Not dying is big I think….
Why is the medical market not responding? Because they already have a drug that doctors are prescribing to their CFS patients, and it’s one if their most profitable. Antidepressants.
I don’t think that millions of people have ME but Chronic fatigue.
I am currently and have been a caregiver for my daughter who has CIFIDS. She has founded a Charity that is directly related to help patients TODAY not 20 years from now with illnesses that are not recognized in the medical field. Her charity is an emotional and financial assistance to patients and their caregivers right now…not in the future, but now. She has been effected by CIFIDS for the past 13 years and has fought many of the same battles listed above. She is fighting back by leaving the corporate world and starting her own on line media company on line, (Aquarian Media Group, LLC) She makes her hours work for her, not for a corporation’s time clock. She works the hours that her body functions the best. Lindsey also founded a charity, Bent But Not Broken, the web site is, bentbutnotbroken.org . She has worked the past 5 years to help others like her self with information, support and financial aid when needed. I would highly recommend for anyone who feels that NOONE understands what you are going through, to contact her site and contact Lindsey Beres herself. She has been contacted from all over the world by people like yourselves who are always searching for a better way of life. She started the Charity because even though there may be some research out there, there isn’t anything that helps patients TODAY, NOW and all in the prime of your lives. People not effected have many opinions and lack of understanding of the life style that becomes a way of life for many very talented smart young people. Log on and help the cause and get some help yourself through the support system she has created.
I must admit that the more articles I read about the obvious complexity of CFS/ME, the more I want myself to just quit researching. It’s exhausting. One week a virus, then small nerve fibers, then something in the brain, then HPA axis dysfunction, then this, then that. Who wouldn’t want to run screaming in the other direction be they patients, drug companies, or researchers. I think I can safely say that other than symptomatology, not one single proven reason has ever been offered up. Just another theory to add to the pile. Yes, there are one million of us but how many of the million voices are crying out to the system and demanding help? Very few, a handful, for reasons that haunt me and some that are self-explanatory due to the illness itself. I wish my family could advocate for me but they don’t because they don’t understand the first thing about my illness. They just see the results and sigh….or worse. Parkinson’s received $80million for research in ONE year alone. MS with it’s 400,000 patients is well-funded and most hospitals have separate clinics for each. Yet ME/CFS is not even taught in medical universities so what do we really expect from any physician or researcher? It’s not even “news” to them. Sad but true. Until more people get on board somehow or urge their friends or family (successfully) to help them, what can we expect? I live alone and am dependent on the help of others for the simplest of tasks. My marriage went down the drain when I was unable to continue my career. I was effectively kicked out of the nest and left to fend for myself. The fact that I am alive and haven’t committed suicide is a miracle in itself as there is not much happiness in my day-to-day existence and certainly less by way of choice. I can wish all I want and feel all the guilt and deride myself but it only makes my circumstances worse. To exist is a bitch. I want to live and make choices and be out in the world. Who in this world will care to see to that while I simply try to stay in this world? I doubt I’m alone with these feelings. We are too fatigued to deal with such complex issues. Our illness IS the complex issue and I have no idea myself in which direction to head so how can I tell our government what to do except to increase funding while researchers are currently interested and before the next diagnosis-du-jour comes along that is less complex and we lose these wonderful people that await funding and support. I’m tired. So tired of the battle. 20 years now. 20 years. 20. marcie
Marcie I feel guilty that I feel the same as you after ony two and half years, and less consequences – at this stage.
🙁
x
I think maybe adrenalin is a factor.
I know that sounds nutty, but when I see a doctor, visitor or use my phone, it often pushes me into running on adrenaline and I seem a lot better than the person described with severe m.e. So people expect a dead person and then get a lucidish version of me (and I just sound a bit dumb, since they didn’t know me before , its not remarkable) and Of course not many people see the crash. Its only now living in anursing home that some see it.
But some will always be deliberately blind because its a scary confronting disease.
And its not a consistent disease, I have bad Mcs – most of the time, but not after an.adrenaline rush.
I think we are just not believable.
The level of illness is not visible and even though we all sing variations of the same tune, it’s up to the discretion and personality type of doctor to be able to see it. Its hard for me to explain that my low level fever is a good sign of restingaand that a drop to normal temperatures just means I’ve overdone it. There are so many things like this..where a normal improvement, actually means the reverse for someone with M.E.
I also find that people are sympathetic to a point then the sheer no. Of symptoms and sensitivities is unbelievable.
We sometimes sound a bit like wacked out hippies (probably a lot of hippies had low level immune problems) .
I think our symptoms confuse people. How can someone be ok after 2pm but not before…to talk for example.
Our disease is just too weird. Its like the ultimate dream sickness of a bludger, made real. (and not so ultimate).
I’m hopeful that a biomarker will turn this around.
I’m sorry that your life has led you to a nursing home. I have lowgrade fever when I’m my sickest and on occasion it’s actually normal and I feel somewhat better. I agree about the adrenaline part in that our brains gets too geared up with stimulus and our sympathetic nervous system would seem to stay more in control than it should. Consequently….. crash. I, too, get almost manic feeling when I have visitors or sometimes phone calls just trying to keep up with what’s going on. That inevitably leads to a crash so I try my best to control the amount of incoming stimulus though often that’s just simply not possible because life keeps happening. Luck and love to ya. Marcie
You’re correct, Sarah — adrenaline is a factor. In social situations, it is difficult for friends to understand that often when we look our best, we are actually doing worse than usual. The increased adrenaline is keeping us “hyped” up.
In my experience, increased adrenaline is partially responsible for the sleep problems common in ME patients. To quote my city’s ME/FM/MCS expert: “In patients with ME/CFS especially, activity in excess of energy levels results in increased adrenaline”, and “Extreme exhaustion can be accompanied by an increase in adrenaline levels. This increase makes night time sleeping more difficult and should be avoided.”
One of the most effective strategies I’ve tried to improve the duration and quality of my sleep is to take a nap in the afternoon. This seems counterintuitive, but by doing so, one reduces the need for increased adrenaline to keep going.
Adrenalin – doesn’t sound nutty to me, two in my family have Addisons disease, and I have had several adrenal failures. Your story is one I relate to, I also find by 2:00 in the day I feel I can function a little, I can get up and go earlier at times, but it knocks me around. It doesn’t last for long.
Sorry you are reduced to a nursing home, but glad you have support. It is hard living without it, harder still having people around that can’t provide it, and I feel that one day that my soul may just ‘die’
🙁
We have a double whammy with ME – we don’t die from it but we are very ill from it.
1. We don’t die from it – think of HIV or cancer. Especially with HIV the funding and the impetus for research came from people whose friends were dying of AIDS.
Cancer charities are often remembered in the wills of those dying of cancer or asked for as donations by family members at funerals, so they are incredibly well funded. (Look up national figures and compare them with the CFS charities and you’ll see what I mean. In the UK the best place to look is on the Charities Aid Foundation website. Cancer Research UK – one of many cancer charities has £500,000,000 turnover. Action for ME, the largest of 2 ME support charities in the UK has a turnover of £750,000 and the few research charities are all much smaller.)
I’ve started pointing this out to any friend who is running a marathon or raising money for cancer – it’s amazing how often this happens. I mention the difficulties smaller charities have getting funding for research compared to the cancer charities, and ask if they would consider running for a smaller charity such as an ME research charity next time. Try it!
2. For CFS/ME/fibromyalgia, the people affected are too ill to fund raise, and their carers too tired looking after their ill loved ones. So private funds have been slow.
So, don’t think conspiracy but do think market forces yet again. But when the drug companies realise the potential profits, they will pour in, in exactly the way they did with HIV. Oddly, the HMRV fiasco has been a turning point in research I think – a lot more interest from respected researchers and drug companies are beginning to prick up their ears. It just takes time – a long time – from this stage to anything that will help us. But I really do feel we are making progress now. Just hang in there everyone!
Dear Monica, I concur with your comments completely. Yay for the Brits!!! I assume that you are at least European based on your spelling of certain words. I do think that XMRV did start the ball rolling. And to think how excited I was to believe that they had found an HIV-like retrovirus. I myself am pushing for our American medical universities to finally include CFS/ME in their curriculum. As well, I feel that the CDC should remove NEI disorders out from under “Chronic Illnesses” so that we won’t be lumped in with heart and pulmonary and diabetic disorders which are a whole separate type of illness. ME/CFS is, as you say, multi-faceted, and needs it’s own arena. Thanks for your comment. marcie
Hi Marcie
Yes, you are right, I’m UK based, but love the Health Rising website – so much information here.
Sorry for miss-spelling XMRV which you noticed!
Monica
Neither the government nor big pharma is going to blindly throw the millions or maybe billions of dollars needed to figure this complex illness out. I think if they had a real clue where to focus, the funding would probably follow.
Let’s just hope that some of the diverse privately funded research going on now helps to narrow down possible route causes.
I was reading about designer T cells to fight infection during stem cell transplants.
Perhaps we can benefit from research in other areas. I have to believe that many suffering from CFS etc. have a variety of hidden infections at the heart of our woes.
http://www.foxnews.com/health/2014/06/26/designer-t-cells-fight-viruses-after-transplants/
I believe Dr. Montoya at Stanford is involved in similar studies.
Best all.
Tim
I don’t think this is an issue based on gender. I’m thinking mainly of how much money and awareness breast cancer gets, it being solely a women’s disease. I believe it gets more funding, awareness raising and sympathy than the solely male prostate cancer.
Maybe the reasons for lack of funding are a lack of patient deaths, but I believe it may have more to do with a social disdain of “mental illness”. Those labelled with the mental illness brand are treated as if they are stupid, infantile and in need of a paternalistic father figure psychiatrist who will solve problems in a God-like manner, if only the patient behaves like a good child and does as they are told. To me this doesn’t say much for the mental health industry. And conversely, disempowering the patient in such a manner can’t really have a positive effect on the patients well being.
That said I do believe that M.E is very much a physical disease, I guess I’m having a whinge about how badly the mentally ill are treated, and why that branding is so awful and disempowering. Even worse to be branded wrongly, and denied treatment.
That said, antidepressants are no better than placebo, and there is no evidence to back their usage at all. See the book “deadly medicines and organised crime” by Peter Gotzche.
I believe it’s a combination of gender and a disease that does not kill; it’s the two together that does it.
There is something, I agree, about a stigma, but mental illnesses still get magnitudes more funding than ME/CFS. Depression gets $400 million/year; schizophrenia – $235 million/year. Despite the stigma they are well funded.
With regards to breast cancer, though, for many years breast cancer got very little funding – it took a lot of advocacy to get that disease funding even as women were dying from it; I’ll bet gender got in the way before. It certainly is getting good funding now.
I had no idea about that book – thanks for mentioning it.