this a manifesto for the ME/CFS community. These are my
thoughts, after nearly five years of watching the
anguish and the neglect that surrounds this disease.
manifesto states what I think should be done now.
is an important word.
There is a
story that Winston Churchill, when he was very old and
sick, summoned the gardener at his beloved country home
in Kent, Chartwell, and asked him to plant an oak tree
in an open space.
gardener, looking at his enfeebled employer, swallowed
an oak tree takes a hundred years to grow.”
better plant it now, hadn't you?” said Churchill.
World War II, Churchill used this same execution
imperative approach to work. Churchill used to stick
little, pre-printed notes — long before the days of
Post-it notes -- on his paperwork for staff that read, “Action
One of the
first things that struck me about ME/CFS, when I started
writing and broadcasting on the subject, was how slow
the pace of progress was, even as the suffering
suggested the need for immediate action.
was how stingy public and private funding for research
was then and is now.
I want my
friends and loves, who are in the grip of a relentless
affliction, whose days are torn from the calendar of
hell, to be cured in my lifetime -- and I am 74. I want
to be able to hold them as whole happy people; the
people they were before they were struck down by an
enemy they did not provoke, a monster they do not
deserve, an unseen captor, a malicious jailer that takes
daily life and makes it into a tool of torture and
the CFIDS Association of America was able to declare
proudly that it had raised $2 million.
National Institutes of Health, a federal agency that
should be pushing research, granted a paltry $5 million
for ME/CFS in 2013. By comparison, in that same year, I
learned that a consortium of foundations was sponsoring
a green power marketing initiative at $6 million a year.
spent nearly 50 years writing about federal funding for
energy, science and technology, and the sums of money
spent has been in the tens of billions of dollars. One
company gets more than $60 million year-in a year-out
for nuclear fusion research -- and I see nothing wrong
But when I
look at the federal funding for ME/CFS research, I am
aghast: It is not funded at a level that can be expected
to produce results. It is, to my mind, a crime against
the sick; morally, if not criminally, indictable.
governments are not free of guilt for the
suffering – and the United Kingdom stands
out among the many offenders."
the scale of suffering that attends ME/CFS, without
making research on the disease a national priority, is
close to wilful neglect; an abrogation of the high
purposes of Hippocrates' calling.
governments are not free of guilt for the suffering –
and the United Kingdom stands out among the many
governments have been seduced by the fraudulent
blandishments of the psychiatric lobby. If a ME/CFS
patient refuses to accept a psychiatric diagnosis, he or
she can either be imprisoned or forced to suffer the
insinuation that they are not physically sick, even if
they cannot get out of bed. There are cases in Europe
where patients refusing the prescribed psychiatric
treatment have been imprisoned, as happened most
recently to Karina Hansen in Denmark.
States is experiencing a boom in natural gas production
and the deployment of solar panels on rooftops.
successes are the manifestation of substantial research
money committed in the 1970s, and sustained since then.
needs certainty of support, both political and
financial, to triumph.
The key is
sustained funding; a splash here and a dash there just
won't do -- it won't do anything. ME/CFS researchers
need to concentrate on their work, wherever that work
takes them, free from the stress of insecure funding.
deserves the level of effort that might lead to success.
It is not getting it now, and it never has had it. It is
appalling that Dr. Ian Lipkin, the highly respected
virus hunter, is trying to raise $1.27 million through
crowd funding to investigate the role of microbiome in
ME/CFS. What we are seeing is a scientist forced to beg.
fundamental research, with application for diseases
beyond ME/CFS, is at the frontier of biomedical science.
If we, as a
nation, are to believe that we are in the forefront of
science, we must be in the forefront of biomedical
research as well as the forefront of computers,
telecommunications, materials and physics.
humbled polio, and developed powerful drug therapies for
transplant vital organs and gave hope to the leper. The
advances came neither cheaply nor easily, but they have
saved lives beyond counting and eased suffering beyond
Why not for
ME/CFS? Why not?
eloquence in the voices of the community. But they are
widely distributed and, sadly, they fall mostly on ears
of those who already know them — the sick, their
families and their advocates.
need to be heard widely, need to be channelled and need
to be focused. A million points of light won't do it. A
laser, a great beam, will do it.
three principal reasons why these voices are not heard
by those who need to hear them:
ME/CFS is a hard story for the media to
ME/CFS has no celebrity doing what Elizabeth
Taylor did for AIDS, what Jerry Lewis did
for Multiple Sclerosis, or what Michael J.
Fox is doing for Parkinson's Disease.
ME/CFS has no presence in Washington.
three, the last is the most critical to act on, and it
is the one that would produce the most measurable
result. Simply stated: Being on the ground in Washington
every day is the essential step the community has to
To get results in
Washington, you need to-see-and-be-seen in the daily
life there. Letters and petitions do not have nearly the
impact as a Washington denizen talking to a
decision-maker in person.
this would amount to one very visible person, who
strolls the halls of Congress, lunches at the clubs and
restaurants, like the Cosmos or Metropolitan clubs, or
the Monocle Restaurant on Capitol Hill. Once, I was
mentioned in the Wonkette blog because I was spotted
entering Bistro B, a favourite restaurant of the
powerful, and those who think they are powerful.
children attend one of the power schools, like St.
Alban's or Sidwell Friends, contacts can be made and
deals can be done at the events.
A friend of
mine enlisted President Bill Clinton's help for a cause
because their children went to the same school.
strike you as banal, but it is the Washington political
is a society of people who are impressed with each
important to be known. If you are invited to the annual
Correspondents' Association or Alfalfa Club dinners, you
are known. The next step is to be known for ME/CFS
the perfect advocate/lobbyist will morph into a
resource, a voice for others in Washington: a source of
information for congressional aides trying to understand
the budget requests of agencies, and a source of
information for reporters writing about diseases of the
A voice in
Washington puts pressure on government agencies to do
the right thing, and on members of Congress to authorize
and appropriate money.
advocate/lobbyist can learn, through the hearing
process, about the diligence and transparency of the
agencies and the quality of their operations; to see if
they are doing the job or treading water, to see how
transparent their operations are and the quality of
professionals operating programs.
salutary source of pressure in Washington is the press
corps. It covers not just politics but also the
functioning of government.
pinnacle of power in the corps are still The Washington
Post, The New York Times and The Wall Street Journal.
news agencies, The Associated Press, Bloomberg and
Reuters, followed by a veritable media army that cover
politics and programs, including Politico, The Hill,
Roll Call, National Journal, and the specialized medical
publications also play important roles.
ago, the center of media activity was New York. Now it
is Washington. A professional advocate for ME/CFS needs
to cultivate the media and to be comfortable with the
currency of Washington and to trade in it.
currency is information.
is a great information market. The successful
lobbyist/advocate is, by the nature of the city and its
functioning, an information broker.
The sums of
money that will be needed to accelerate research cannot
be calculated and could be very substantial.
funding, above all, needs to be sustained at predictable
pharmaceutical industry figures that a new drug can cost
upwards of $1.2 billion. I mention it only to hint at
the vast amount of money needed for drug research and
ME/CFS will need and for how long is an existential
stimulates research, attracts new young minds to the
field and leads to success. Right now, there is so
little money funding so few researchers in ME/CFS.
United States, that success may be a long time in coming
– too long for those for whom today will be a living
hell, as yesterday was and tomorrow will be.
that for as little as $1 million, a start toward a
Washington presence can be made. That would
one advocate/lobbyist, one office and one assistant for
one year; not a smidgeon of attention from a giant
lobbying firm, but a dedicated ME/CFS standard-bearer.
Funding should grow within a year, as the ME/CFS cause
comes out of the shadows.
a small business in Washington for 33 years, and I am
confident that a new ME/CFS presence there will reverse
the disease's funding fortunes at NIH, increase media
awareness, and cause the big foundations to sit up and
take notice. It would give ME/CFS the kind of presence
that other diseases with active advocates – COPD, ALS,
MS and others -- have in Washingon and the nation.
If this is
not done the government will continue to ignore the case
for ME/CFS. Worse, the new billionaires who are
beginning to throw real money into biomedical research
will not know about ME/CFS. It will be hidden in plain
sight much as it has been from the wider public.
needs a place on the national agenda if it is to be
understood and cured in reasonable time, and if the very
best minds are to be attracted to the task and to stay
Churchill oak needs to be planted now, and in sight of
the U.S. Capitol.