(Health Rising is publishing Jorgen Jelstad’s blog with the intent to underscore the work ahead for ME/CFS as International Awareness Day approaches on May 12th. May also happens to be the month that the NIH’s Working Group for ME/CFS will apply for funding for projects such as RFA’s, Clinical Trials and/or Centers of Excellence that are needed to propel ME/CFS forward and begin to make up for years of neglect. )
Male Pattern Baldness
My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.
Nancy Klimas, Professor of Microbiology and Immunology, in the The New York Times (2009)
According to Nancy Klimas research into male pattern baldness gets six times more federal funding in the US than research into ME/CFS. It’s not so strange, then, that it takes time to find good answers to the ME/CFS enigma.
I have written many blog posts at my Norwegian blog De Bortgjemte about positive developments in the ME/CFS research field, and those definitely exist. But it most certainly is not a booming field with increasing budgets. And that is the main reason we do not know more about disease mechanisms or effective treatments.
For 25 years ME/CFS has been near the bottom of the list when it comes to funding for research. Over time the level of funding for ME/CFS research is deplorable.
Funding Levels
The following graph shows NIH funding for ME/CFS research compared to three comparable diseases, MS, arthritis and lupus:
These numbers say it all. NIH spends around $115 million on MS research every year and around $5 million on ME/CFS. (Source: NIH Categorical Spending).
To put it another way, every single year of MS research equals about 23 years of ME/CFS research. To put it yet another way; more money is spent about every year on MS, than has ever been spent on ME/CFS.
The same comparison shows that one year of arthritis research translates into 50 years of ME/CFS research. One year of NIH spending on HIV/AIDS is the equivalent of about 600 years’ worth of ME/CFS grants.
If you’re wondering why we are where we are with ME/CFS with no approved treatments and no understanding of its core pathophysiology this is why.
While we are far from knowing everything about HIV, MS and RA dozens of drugs have been and are being developed for them. HIV/AIDS at this point, is more considered a chronic illness than a fatal disease now. That’s not the result of magic or luck; it’s simply the fruit of adequate funding.
Given what’s been spent it’s no wonder we know so little about ME/CFS. In fact, given what’s been spent, it’s a wonder we know as much as we do.
Prevalence vs Funding
One would think some relationship would exist between the number of people afflicted with a disease and the amount of funding that disease gets.
The following graph shows the estimated prevalence of the diseases.
ME/CFS afflicts far more people than the autoimmune disease lupus, yet NIH allocates 20 times more funding for lupus.
I wish for research for all these diseases to thrive. But I think we should take note of what must be called unfair differences. Should not ME/CFS patients also be allowed to benefit from public research spending? In fact, should not the ME/CFS research field be given some sort of preference given it’s chronic underfinancing for the last quarter of a century?
Functional Status vs Funding
Several studies that show the functional status in ME/CFS is lower than in many other chronic diseases leave no doubt that this is a group of severely ill patients. We also tend to think that more serious diseases get more funding than less severe diseases. Just as there is no coherence between prevalence and research funding in ME/CFS, however, there is no coherence between disease burden and funding either.
This is despite the fact that the FDA now acknowledges that chronic fatigue syndrome is as serious a disease as RA and MS. (A recent study found that 25% of people with ME/CFS are homebound.)
The SF-36 is a standardized health questionnaire that is frequently used to assess eight aspects of health and functioning.
- vitality
- physical functioning
- bodily pain
- general health perceptions
- physical role functioning
- emotional role functioning
- social role functioning
- mental health
Check out the SF-36 scores from cancer, depression, rheumatoid arthritis and ME/CFS patients from a study published in BMC Public Health. The outlier – the line at the very bottom of the graph which designates the least functional group – is ME/CFS. It indicates people with ME/CFS are not just more impaired, but much more impaired than people with othe major diseases. In fact, it’s not even close.
A History of Government Obstruction and Negligence
In the 1990’s we found out that the CDC spent money earmarked for ME/CFS on other programs and activities. When a whistle blower tried to report this internally he was, according to the Washington Times, “basically told to shut up”.
An audit revealed, though, that for four years the CDC spent 40-60% of the funds earmarked for ME/CFS on unrelated matters. Several CDC staff members gave false testimony to Congress about the actual use of the money.
«CDC officials provided inaccurate information to Congress regarding the use of CFS funds, and have not supported the CFS program to the extent recommended and encouraged by Congress.» From the official audit report from 1999.
It’s clear, then, ME/CFS research has been given extremely low priority, and it’s funding has, at times, even been actively obstructed by the government officials appointed to administer research funds.
Published Studies
It is, therefore, not surprising that a similar picture emerges when comparing the number of published studies in ME/CFS and some of the diseases I have used as comparisons:
The graph shows how many studies are published each year world wide (Source: PubMed). While around 200 research articles on ME/CFS were published in 2013, that same year brought almost 4000 articles on MS. That’s roughly the same number of studies ever published in ME/CFS field (5000).
This is what needs to change. Research is where we will find the answers to why people with ME/CFS will get ill. And how we can help them.
The steps the NIH has taken invigorate ME/CFS research – the large Clinical Center Study is to begin soon, and the increased funding for past research efforts – have been gratifying, but it’s main work – the publication of RFA’s, clinical trials and establishing Center’s of Excellence – is still ahead.
(The original form of this blog post was published in Norwegian at debortgjemte.com in May 2014. It was translated into English by Anne Örtegren after she asked my permission to do so. After that Cort Johnson made some additions. For a long time I have had an intention of publishing more in English, but unfortunately I have not had the capacity to do so. So a big thanks to Anne for the translation!)
Things do need to change, and it’s clear that they have just begun to and we are finally holding a light to what has somehow been a public health “dirty secret” for decades. Given this is about the drastic need for funding, I share this campaign that asks the NIH (Francis Collins) and the Secretary of Health and Human Resources for drastically higher research funding. I know they’ve taken some huge first steps, but it’d be nice to get an official notice that this disease WILL be taken and researched seriously, and a commitment for the funding. It almost has 30,000 signatures and I know if we all signed/shared we could make it even more impactful. I’m 31, I’ve been sick since I was 9. I’m ready to have my life back. Please sign and share. Thank you. https://www.change.org/p/increase-funding-so-we-can-find-a-cure
Thanks for preparing this concise graphic report. The graphs really help us visualize in all the different ways that ME/cfs has been ignored, pushed aside and maligned.
I have CFS and am pretty much homebound. I also have a full head of hair. BUT I don’t think male pattern baldness is a fair comparison. I had an acquaintance that committed suicide over his hair loss. If you do a quick google search you’ll find a vast amount of links regarding hair loss and suicide. Much more than if you googled CFS related suicide. Although I’ve personally heard of more CFS related suicides because I’m a part of the community. Articles like this are just belittling another group of people in the same way that we are. Aren’t we better than that?
It certainly wasn’t meant in that spirit. I for instance had no idea that people committed suicide over hair loss. On the other hand, hair loss, while obviously more emotionally traumatic than I understood, is not a disease that causes people to be unable to work, exercise, etc. They’re very different kinds of disorders. One is emotionally disturbing but not physically limiting in any way while the other is both.
Corresponding to what Denise has stated, during my quick search I found the “Relationship Between Male Pattern Baldness and the Risk of Aggressive Prostate Cancer.”
http://jco.ascopubs.org/content/early/2014/09/15/JCO.2014.55.4279.abstract?cited-by=yes&legid=jco;JCO.2014.55.4279v1
Probably a little more than emotionally traumatic. If prostate cancer and hair loss share the same mechanism, and that mechanism is found and able to be corrected through the money used in hair loss research and successfully treats prostate cancer, then I say it’s money well spent.
“male-pattern baldness gets more research funds than ME/CFS in the US”
I have seen/heard Dr. Klimas refer to this in several places but have never seen the source for funding for male-pattern baldness (which has been linked to several diseases).
What is the original source for Dr. Klimas’ quote re funding for male-pattern balding? (I have searched several times but have not been able to find that funding info.)
I see a lot of patients who aren’t outraged. I understand the fatigue, but this is sickening.
I remember in the early 90ies attending a sports medicine clinic at the university. The surgeon (I had shoulder repair) told me I had fibromyalgia. This was strongly dismissed by the next several doctors. When I was dx with CFS in the later 90ies again it was almost aggressively dismissed by many. It was then nick-named the “yuppie flu”. So no wonder we are at the bottom of the heap with funding and research!
I truly wonder if I’d be in the state I am today IF I knew then to slow down and heal instead of pushing myself through life.
I think it is clear that those working for the U.S. government have failed miserably in allocating funding for CFS in relation to just how debilitating it is and how many are affected.
Are any other governments putting any meaningful effort into research on CFS? What is happening in the very wealthy country of Norway? It seems that quite a fair number of people from Northern Europe are ill with CFS.
Hey Greg , apparently the government needs help and reminding that this is a health crisis and needs attention now in the way of funding. So im asking that you sign and share this petition, which will go directly to NIH and Health and Human Resources and requests just that–dramatically higher research funding. 31,000 people have spoken up in support already, and we need all we can get in order to really be heard. a lot of of people (like me) are too sick to attend the protest in DC, so this is another way to join in and Fight for his long overdue change…I hope you’ll sign and share..
Best,
Mary (not bald but willing if it meant a cure)
https://www.change.org/p/increase-funding-so-we-can-find-a-cure
I am 83, and my hair is now pretty thin, with a long receding forehead–I rather like the look. It does not bother me one bit. On the other hand, the radical loss of energy, mental as well as physical, that ME has inflicted for now 8 years, is the most difficult change I have ever had to deal with. Give me back 20% of my lost energy, and I will gladly give the last remaining hair on my head.
🙂
I would gladly go bald if it meant I would be well again.imagine waking up and having energy,by traveling and not feeling like a zombie by the time you reach your destination.: dancing at a wedding and not spending the next 3 days in bed! It feels like a dream doesn’t it.: and yet I think we really are on the forefront if change that is going to help a lot of us sick people feel better. So hang in there Chris, maybe by the time you’re 88 we’ll be cured and you’ll be ready to take on the world.. Hair or no hair.
I AM a Belgium neurologist specializing in CFS and ME. It is a shame that our patients are treated poorly and often declined even marginal treatments by the premium of doctors!
Please help us
It’s a rare neurologist that specializes in ME/CFS. I imagine that you’re shocked to the see the medical profession make things worse rather than better…..It’s not what any of us expect that’s for sure.
The NIH has a whole department inherently for unfair funding. There’s no way quackery like magic would get funded if it had to fairly compete.
The Alternative Medicine Racket: How the Feds Fund Quacks
https://www.youtube.com/watch?v=RWbkvCMuU5A
Cort, are there sites out there where we can set up a personal fundraising page that is automatically linked to a specific research fundraising?
Youcaring.com charges no fees. Funds go directly to a PayPal account, and PayPal charges their usual fee, which is quite small.
I don’t know…..It sounds like a great idea though 🙂
I’m not sure about that either, but maybe in the meantime we could all start to get behind this petition. I know I probably seem like a pain in the ass posting this everywhere, but this is truly a matter of power in numbers. The larger the amount of signatures, the more pressure applied to these agencies to act. Collins and Burwell are sent a copy of the petition with the attached letter for every thousand signatures, as well as all the comments people leave on the feedback page–which when you read them, are highly impactful. If we want a large number of voices to be heard by the NIH, this is a great start. Trying to get to 35,000 signatures by or before the protest on May 25th. The petition is less personal and more practical in its demands: a dramatic increase in funding. The more people we get behind it, the more urgency and likelihood that change will happen and that it will happen sooner than later. Please, sign and share this campaign if you haven’t already. It takes 30 seconds and could actually change things in a big way. Thanks for the article Cort.
https://www.change.org/p/increase-funding-so-we-can-find-a-cure
hi cort, the gist please