(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:

MECFS research funding
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.

SF-36 Nacul et al

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:

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. 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!)


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