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" I Thought It Was a Typo…" Dr. Zaher Nahle on funding for ME

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada

http://solvecfs.org/i-thought-it-was-a-typo


I Thought It Was a Typo…

By Zaher Nahle, PhD, MPA
Vice President for Research and Scientific Programs
Solve ME/CFS Initiative

During the course of interviewing for this position, I was reviewing the amount of government spending on ME/CFS. I came across a figure of $5.4 million in one article. I assumed the number must have been a typo. I thought, not only as a rational reader, but also as a scientist who directed a research laboratory and balanced budgets, that it must be $5 billion, with a “b,” not million with an “m.” After all, for a devastating illness destroying the lives of at least 2.5 million people in the United States alone and causing north of $17 billion per year in economic losses, a $5 billion expenditure seemed reasonable, if not absolutely necessary.

The real shocker, however, came the next day when I ran into that same $5 million figure from a separate, trusted source. My shock turned to outrage on behalf of the patient community. Could it be true? Could the mighty U.S. government commit only $5 million for this devastating, woefully understudied disease with no cure, diagnostics or defined pathology? To put things in perspective, $5 million can barely furnish a modest core facility in one science department and is the individual yearly budget of hundreds of medium-size labs investigating other diseases. It is also a fraction of what Roche Pharmaceuticals, for instance, spends on Research & Development in a single week.

And just when you think that you have seen it all, now even that measly $5.4 million was unashamedly stricken from the prospective Senate budget of 2016, the only disease to get such remarkable “attention.” The sad irony lies in the stark contrast of how we generously commit tens of billions per year in (commendable) foreign aid to alleviate human suffering across the globe, but fail to invest crumbs in the wellbeing of our own vulnerable population, people with ME/CFS.

While I have never been one to subscribe to conspiracy theories, I have to wonder why the government continues to fumble repeatedly on this particular issue. I’m reminded of the words of the science writer Arthur C. Clark in 3001, The Final Odyssey: “Never attribute to malevolence what is merely due to incompetence.” ME/CFS patients are a proud and a resilient bunch who are not asking for handouts. They are merely demanding what is their inalienable right: that their government invest in finding cures so that they can live dignified, productive and meaningful lives like everyone else.

At the Solve ME/CFS Initiative, we are doing all we can to fill that enormous research gap and drive collaborations that foster promising discoveries. That said, we insist on a clear, tractable and transparent federal funding agenda for ME/CFS as the most effective path toward a cure. It is the responsibility of the government to find cures for diseases that afflict millions of its citizens, not the other way round. We are darn serious about that!
 

perrier

Senior Member
Messages
1,254
Perhaps, and this may be the optimist view, the name of this illness is at fault too. Say multiple sclerosis and concern and sympathy result; say CFS and folks ask: are you always tired? Gee, I am tired too! In the meantime young lives are totally destroyed.
 

JAH

Senior Member
Messages
497
Location
Northern California
I support them whenever I use Amazon, by using smile.amazon. It's the same as Amazon, a portion of your purchase goes to a charity of your choice - you can choose Phoenix Rising, OMI, Simmaron (Dr. Peterson). A lot of great ones. You can sign up at smile.amazon.com,, then bookmark it and use it to order your stuff. Simple.

IGive is the other one folks have talked about around here, and I use them as well when I order on line to donate to CFS charities, including this one.

JAH
 

Nielk

Senior Member
Messages
6,970
If the incompetence would be widespread all across the health agencies and evenly distributed regardless which disease one is looking at, then it could be called incompetence.

But, when the incompetence is targeted consistently toward a specific disease year after year....for three decades, it cannot be solely attributed to incompetence.
 

WillowTree

ME/CFS is NOT fatigue!
Messages
49
Location
Illinois
If the incompetence would be widespread all across the health agencies and evenly distributed regardless which disease one is looking at, then it could be called incompetence.

But, when the incompetence is targeted consistently toward a specific disease year after year....for three decades, it cannot be solely attributed to incompetence.

Agreed 100 percent! One has to wonder what is being protected that for 30 years patients with ME had to be disbelieved and discredited, with an attempt made to define ME out of existence. WHY? What are they afraid will be discovered if ME were properly researched? I just wonder.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA

The greatest evils in this world are implemented via rubber stamp.

Also at this level, myths (and euphemisms) reassure people that they are not causing significant harm.

Those myths are instrumental. Nobody wants to question the myths. They look the other way.

This guy is amazing. Thanks for sharing @alex3619

[Edit: Seriously, everyone should read THIS ONE, right this very moment.]

-J
 
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Aurator

Senior Member
Messages
625
What are they afraid will be discovered if ME were properly researched?
Leaving aside the possibility of conspiracies, probably the prevailing view in the decision makers' inner sanctum (or sancta) is that it has been properly researched already in a sense: the absence of consistent findings from test results of PWME over the years persuades them it is almost certainly psychosomatic. So why would they want to throw money away researching the hypochondria of a load of whingeing so-and-so's?
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Leaving aside the possibility of conspiracies,

By "conspiracies", I assume you mean a deliberate policy of classifying the illness as "psychosomatic". There is little reason to doubt the existence of this policy when one can read about it in the UK Parliament's 2006 Gibson Inquiry

"CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies."

The Group called for investigation of what they called, "numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here."

https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome

The UK psychobabblers have long pedaled their rubbish in the US as well. Simon Wessely's involvement goes back at least to a 1991 NIAID & NIMH conference. Wessely and Sharpe were both part of the Fukuda 1994 criteria group. The "State of Science Consultation" by NIAID (Feb 2000) originally featured just Straus, Wesseley, Sharpe, and a pharma industry shrink until advocates made such a stink that Straus was forced to include a few real experts.

The disability insurers benefit from "CFS is mental illness". Insurer hatchet men advised DWP, NIH, and CDC that we have a mental illness. Those agencies adopted that policy. That policy is still in effect. These are facts, not theory or speculation.