The chronic lack of funds for ME/CFS research

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. Perhaps Klimas refers to an exceptionally meagre year when she mentions the sum of $3 million, but in the larger perspective it is all the same. Over time the level of funding for ME/CFS research is deplorable.

The following graph shows NIH funding for ME/CFS research compared to three comparable diseases, MS, arthritis and lupus:

MECFS research funding
These numbers say it all. NIH spends around $115 million on MS research every year. For ME/CFS, the number is $5 million. (Source: NIH Categorical Spending).

One single year of MS research equals about 23 years of ME/CFS research. That is just about all ME/CFS research ever done.

The same comparison with arthritis shows that one year of arthritis research translates into 50 years of ME/CFS research. And one year of NIH spending on HIV/AIDS is the equivalent of about 600 years’ worth of ME/CFS grants.

Still, no cure has been found for HIV/AIDS. We do not know why people develop MS. And for patients with RA, treatment is still focused on symptom relief.

Looking at these facts it is no wonder we know so little about ME/CFS. The government institutions have decided this is where we should be at.

In HIV, MS and RA, researchers have developed effective treatments. We are far from knowing everything, but we know a lot. Much more than just a few years ago. Due to research funding. Billions of it.

So, is there a coherence between the level of funding and how many people are afflicted by each disease?

The following graph shows the estimated prevalence of the diseases mentioned above:

Prevalence
ME/CFS afflicts far more people than the autoimmune disease lupus. Still, NIH allocates 20 times more funding for research into lupus.

I wish research for all these diseases to thrive. As much as possible. I do not want funds to be taken from anybody. 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? Especially since the ME/CFS research field has been chronically underfinanced for the last quarter of a century.

Several studies show that the functional status in ME/CFS is lower than in many other chronic diseases. There can be no doubt that this is a group of severely ill patients. But just as there is no coherence between prevalence and research funds, there is no coherence between disease burden and funding budgets either.

The following graph describes SF-36 scores in men and women with ME/CFS, other health conditions and healthy controls from a study published in BMC Public Health:

SF-36 Nacul et al

In the 1990s it was revealed 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 that CDC for four years spent 40-60% of the funds earmarked for ME/CFS on unrelated matters. Several CDC staff members had given 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.

Based on all of this it is reasonable to assert that ME/CFS research has been given extremely low priority. At times it even looks like it has been actively obstructed by the government institutions appointed to administer research funds.

It is therefore not surprising that the following picture emerges when comparing the number of published studies in s0me of the diseases I have used as comparisons in this blog post:

MECFS published studies 1988-2013

 

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. The total amount of published studies in the ME/CFS field is roughly 5000. That is the grand total.

This is what needs to change. Because this is also where answers will be found. To why people get ill. And how we can help them.

(This blog post was originally 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. 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 big thanks to Anne for the translation!)

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One response to “The chronic lack of funds for ME/CFS research

  1. Pingback: ME/CVS : het Zwarte Gat | Heer en Meester

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