Thursday, March 20, 2014

How to make a disease disappear

It is overdue, I need to reopen this blog and speak up. Here is an opinion editorial by Craig Mp presented today as the Biennal (or make it 3) International ME Conference began today in San Francisco. Craig posted this on an international mailing list called Co-Cure.

If you are new to the disease and it doesn't seem believable, it's because it isn't. It's totally unbelievable, but it's true. There are millions of us sick, living as recluse, rejected by the health care systems. And while just a handful of physicians actually believe us patients that we are indeed very sick, the rest of them physicians do not believe it's a real disease, or they believe that it should be treated with anti-depressants, cognitive behavioral therapy and graded exercise therapy. The abandonment of a disease is still going on, 30 years after the well documented epidemics.

And I will be back soon. Canadian content: Health Canada and Public Health Agency still denies there is a problem- seemingly they are turning to the CDC when it comes to what to do- and we all know where that leads. I have lots to say. Like I said I will be back soon.

(pardon the formatting) 

Here is Craig's piece.

The following is an op/ed candid discussion between Stephen Straus and Keiji
Fukuda. The letter discussed in this op/ed is linked at the bottom of the
webpage – freely available to all.
Feel free to post or distribute anything to blogs and forums.

CDC AND NIH Officials Discussed "Desirable Outcome" of Seeing A Distinct
Illness "Evaporate”.

(CFS Report Op/Ed, March 2014) -- Craig Maupin

In recent months, efforts to redefine chronic fatigue syndrome
(CFS) have come under much scrutiny. The attention on the new definition
should come as no surprise. Definitions and labels can be abused to direct
research and clinical outcomes toward personal beliefs of authors. In the
case of CFS, it has been easy, and perhaps necessary, for the DHHS to
dismiss such past problems as unfounded speculation.
The truth is far more complex. In a document obtained by
the CFS Report (see links below), Stephen E. Straus, widely known as the
creator of the “fatigue syndrome” concept, discussed his hopes for 1994
redefinition of CFS with the CDC's Keiji Fukuda. The Straus/Fukuda letter,
written after the submission of the new definition for publication, is
frank. Straus predicts the new definition would cause “the notion of a
discrete fatigue illness” to “evaporate”. Once a concept of a distinct
disease evaporates, Straus claims a framework of idiopathic fatigue -- a
symptom that falls short of a distinct disease -- would be left behind.
Straus predicts the new definition may lead to the “entire abandonment” of
CFS. It is a strange prediction, to champion a definition that leads to
the future abandonment, evaporation, and discreditation of that which one
claims to want to define.
More remarkably, many attributions and beliefs in the Straus/Fukuda
letter can be seen current NIH peer review policies, conferences, and
RFAs. Straus was often known to research on immunological findings in
subsets as CFS as "dubious", while praising researchers/papers focused on
mind-body interaction. Straus also claimed CFS's pathology was "akin to
pain", which has a "locus in the brain". Today, grants for CFS are
reviewed by reviewers who predominantly work in areas related to
hypersensitivity to pain, with scores delivered by reviewers among a group
of pain "oversensitivity" syndromes.
Like the Straus/Fukuda letter, RFAs and funding requests from the
NIH also emphasize the brain and pain, while deemphasizing immunological
findings. No mention of recent CFS research on autoimmunity, B cells, or
antibodies are found NIH funding requests. The current RFA (PAR 12-032)
encourages CFS grant proposals fit seven categories the NIH terms as
applicable to CFS: aging and fatigue (NIA), alcoholism and fatigue
(NIAAA), pelvic pain disorders (NIDCR/NIDDK), NIAID (unspecified, but
immunologic mention seems purged from the current RFA), the brain (NINDS),
behavioral relationships to fatigue (NINR), and mind/body interaction
(NICAM). Terrell Hoffeld, who oversaw CFS peer review seemed to reiterate
attributions in the Straus/Fukuda letter when he told me that CFS had "moved
on" from immunological research, and that relieving pan and anxiety from a
neurological/brain approach was his goal at the CSR. (link)
Straus admits that his integrative "fatigue syndrome" concept is not
seen by some as “worthy of study”. Years later, his words seem eerily
prophetic. Funding support for CFS is among the lowest of categorized
diseases at the NIH.
Straus viewed CFS as predominantly a women's illness (NIH
Publication No. 91-3059). Studies have shown women are less likely to be
viewed as having a disease than a subjective complaint by doctors (Arber
2006). Straus, himself a clinician, suggests to Fukuda that CFS is an
“impression on the part of the patient or physician that such a complaint is
important”. Such attributions seem to represent a traditional mindset
toward women's medical issues. Women are also more likely to be seen as
having their symptoms originate in the brain or from psychological causes
(Hoffman, Tarzian, 2001). Straus displays a disdain for CFS models that
fail to revolve around an unnamed "locus in the brain".
Whether the DHHS acknowledges it or not, attributions seen in the
letter between Straus/Fukuda letter laid much of the foundation for how the
NIH handles emerging illnesses that predominantly affect women, such as
CFS. Conferences sponsored by Drs. Vivian Pinn and Lawrence Tabak for CFS
sought to interfuse pain, the concept of hypersensitivity to symptoms, and
central processing in the brain into efforts to direct scientific research
for CFS. Dr. Eleanor Hanna, constantly reiterated that grant proposals seen
as "bad science" would not be considered fundable by ICs, and her views on
CFS were well known within the ORWH and among Trans-NIH Working Group
members (see link below). When the NIH continually ignores recent findings
on B cells, unique antibodies and immune markers, and autoimmunity in its
conferences, RFAs, and grant reviews; the foundation left by Straus seems
not far behind.
Straus sold the idea within the NIH shortly after CFS was first
defined that negative studies for Epstein-Barre and known virus' had
scientifically disproved a viral or immunological pathology. However, some
past DHHS leaders, such as Donna Dean and Arthur Lawrence have pushed the
HHS to acknowledge hundreds of peer reviewed papers documenting
immunological defects in subsets of CFS. A definition of CFS on the ORWH
website seems to suggest a more distinctive illness than Straus'
definition. Perhaps such efforts suggest that some in the HHS realize
the definition and label created by Straus was never meant to create a
benign search for scientific truth.
This disease possesses clear, distinct, and definable traits
seen in no other illness: severe post-exertional collapse, flu-like
symptoms, and orthostatic intolerance. Unlike many illnesses, the disease
often is preceded by an acute viral infection. Without a definition and
label that puts these distinct and unique symptoms at the forefront, the HHS
is simply striving to cling to one man’s "desired outcome" for the
“evaporation” of a severe disease.
Defining and labeling any illness, if done poorly, can do permanent
damage. Fifty scientific experts know it. The sufferers and
families and of those who suffer from CFS know it. And much of the
scrutiny on the definition of CFS and current efforts of the IOM to revise
the definition for CFS, stem from historical and clear evidence that
personal attributions played a role in the "evaporation" and "abandonment"
of a devastating disease.
CFIDS report

1 comment:

  1. So glad to see the blog going again. Think this would be good for tweeters to share with journalists and media