Tuesday, March 29, 2016

'Chronic Fatigue Syndrome isn't What You Think it is, it's Much Worse

All this time, I hadn't taken his illness seriously, because I thought of it as that: an illness. In reality, it's a disease called myalgic encephalomyelitis, that robs people of their lives, often leaving them bed-ridden and unable to care for themselves.
... Currently, the National Institute of Health spends about $2,500 per person with HIV/AIDS to find a cure. They spend about $5 on ME/CFS.
... Before any major funding for NIH to study ME/CFS will occur, a drastic change in mindset needs to happen throughout the general population. We need to say "we believe you" to so many who have been told to simply cure themselves. We need to stand up for them and fight, because they can't.

No, it's not a typo


I Thought It Was a Typo…

By Zaher Nahle, PhD, MPA
Vice President for Research and Scientific Programs
Solve ME/CFS Initiative
August 21, 2015

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!
* * *
I, too, have been told that I must be mistaken.  If ME/CFS is as life-changing as I say it is, it must be getting lots of research money.  If it's only getting $5M (in a good year), then it can't be as bad as I say it is.
Imagine the outrage if we told cancer patients that they could only have as much research as they could raise money for themselves.  There would be no surgery, no chemo -- they would get the same hopeless nonsense we get, "it has a name; we can't do anything for you but send you home to wait to die."

Klimas lecture on YouTube

Note: A presentation by Dr. Nancy Klimas from a couple years ago but
just uploaded to Youtube.



ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome /
SEID / New Zealand]
ANZMES videos
Published on Jun 24, 2015

Immunologist, and top ME/CFS researcher, Dr Klimas talks about Chronic
Fatigue Syndrome. This is a great resource for Doctors, patients and
researchers alike.

The lecture covers biological aspects of ME/CFS such as autonomic
dysfunction, hypotension, hormonal imbalances, immune abnormalities,
viral infections, restorative sleep, Fibromyalgia, aerobic thresholds,
and more.

Dr Klimas highlights a wide range of treatments. The number of levers
for managing ME/CFS may surprise you.

Keywords: Chronic Fatigue Syndrome, Myalgic Encephalomyelitis,
Post-viral fatigue, SEID

Breakthrough? Or another detour?


Chronic fatigue breakthrough offers hope for millions

02 July 2015
Magazine issue 3028

Misunderstood and neglected for more than 25 years, there is suddenly
new hope for people diagnosed with what was once cruelly called "yuppy

HAVING a condition that no one understands is bad enough. Having one
that many also doubt the existence of is worse. Yet that has been the
unenviable fate of millions of people diagnosed with chronic fatigue

CFS first entered the medical lexicon in 1988 to describe a cluster of
symptoms without an obvious cause that doctors were seeing in the Lake
Tahoe area of Nevada. The principal symptom was debilitating
tiredness, but people also complained of sore throats, headaches,
muscle pain and various other manifestations of general malaise.

The lack of a clear biological cause, the fuzziness of the symptoms
and the fact that many of the people diagnosed were young
professionals opened the door to a smear campaign. The media were
quick to dub CFS "yuppie flu".

Although it has shaken off some of its more pejorative nicknames in
recent years, CFS has struggled to lose the stigma. People with the
syndrome still say they are not taken seriously, blamed for their
illness, or accused of malingering. Treatments are often psychiatric,
which are a great help to many but unintentionally add weight to the
idea that CFS has no physical cause.

Over the years, medical groups have launched campaigns to have CFS
taken more seriously. The latest was in February, when the US
Institute of Medicine proposed making a clean break with the past by
renaming it systemic exertion intolerance disease. This has not caught
on as yet.

The unsatisfactory state of affairs is largely a reflection of the
fact that we do not have a good biological explanation for CFS. That
has not been for lack of trying, but even here the disease seems to be
a magnet for controversy. A paper published in 2009 in Science claimed
to have found an association between CFS and a mouse virus. The paper
was later retracted after other teams failed to replicate the result.

Now there is hope of a breakthrough. Researchers in Norway have been
trialling a drug normally used to knock out white blood cells in
people with lymphoma and rheumatoid arthritis. Two thirds of the
people who took it experienced major remission of CFS symptoms,
essentially returning to normal life, with bursts of vitality
unthinkable while they were ill (see "Antibody wipeout relieves
symptoms of chronic fatigue syndrome").

The discovery – which sprang from a serendipitous observation – offers
more than just the promise of a much-needed treatment. It also
suggests that the symptoms are somehow caused by antibodies originally
produced to fight off an infection. The researchers speculate that
they might disrupt blood flow, leaving muscles drained of energy.

If correct, this brings the scientific story full circle. CFS was
initially suspected to be a "post-viral" syndrome – the lingering
after-effects of an infection with Epstein-Barr. More importantly, it
could offer people diagnosed with CFS both physical relief and
psychological closure.

There are wider implications too. Pain and fatigue without an obvious
cause account for a large percentage of visits to the doctor, and
usually have an unsatisfactory outcome. On top of that, there are many
other conditions – Morgellons, for example – that struggle for
credibility. If the CFS mystery is finally solved, that offers hope to
countless others struggling with unexplained symptoms. It may take
another serendipitous discovery, but science is good at those.

This article appeared in print under the headline "Revitalised"

NIH Sidesteps Critical Problems with the ME/CFS Study - MEadvocacy.

On March 11th, MEadvocacy received a reply to our petition from Dr. Koroshetz. However, Dr. Koroshetz's reply and NIH/NINDS' actions sidestepped our crucial concerns.