Think of this as a primer for all of those, like the sufferers of the awful disease Chronic Fatigue Syndrome, who need to be heard in Washington and aren't. Silence has a price.
There are two branches of lobbying in Washington. The first is big lobbying, with big money making big campaign contributions. The second is everyday lobbying, which is quietly effective, scarcely organized and part of the fabric of decision-making. Call it "informational lobbying."
Congress cannot expected to be knowledgeable about a myriad of issues, and this is where the lobbyists perform their often more innocent function. Simply, they know stuff. Their advice isn't always objective, but it's informed.
Certainly, Congress has the best research available through the Congressional Research Service of the Library of Congress and all the executive branch agencies. But it's a lot easier to call a friend, where a question can be asked and answered in the vernacular: “Joe, what's the story on the helium shortage?” It can be argued that, at this level, lobbying is not suspect but efficient.
Proximity is a force in Washington, familiarity a lever. There are no fingerprints; it's how the system works. A chance meeting in a restaurant can change the course of policy; influence a congressional opinion about something obscure but important, like the Endangered Species Act, which is now receiving attention on its 40th anniversary.
The indictment of this informal lobbying regime is not that it exists and works, but that if you aren't at the table, you won't be heard. Woe betide those who don't have a lobbying operation, however modest, in Washington.
The lobby-less must suffer in obscurity: no lobby means no input. No conversation after church or at a kid's soccer game means no information is spreading about actions and decisions that will have impact down the line.
Make no mistake, proximity means a lot in the informing of government. A few casual words will often trump a great academic study.
For the past several years, I've taken a keen interest in Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis. It's a disease associated with the suppression, for reasons unknown, of the immune system. To get it is to contract a life sentence of daily suffering, often so severe that patients can be bedridden for years. They think of themselves as “the damned.”
This community has issues with the federal government; specifically with the Department of Health and Human Services, which has oversight of the National Institutes of the Health. Yet the advocates for CFS — many of them superbly articulate – aren't heard in Washington.
This is very clear, at the moment, when the department, acting through the NIH, has signed a contract with the Institute of Medicine to, according to NIH, to develop “clinical diagnostic criteria” for CFS.
This has so enraged the top tier of 35 doctors and researchers in the field that they — risking good relations and future research funding — have written to HHS Secretary Kathleen Sibelius, imploring her to halt this folly. The Institute of Medicine doesn't have expertise in this field, according to the CFS doctors.
Most CFS specialists agree that an effective definition of the disease, known as the Canadian Consensus Criteria, is working fine and should be retained. Confusion and expense from Washington aren't needed. A wrong definition can be destructive to research, treatment and patient well-being. It will have consequences.
But the protests may have come too late, as knowledge of what the NIH was up to came too late.
To me, this bureaucratic shuffle by HHS is an example of the dangers of not having a presence in Washington. Government responds to pressure. No presence, no pressure, no result — or worse, a bad result.
You don't need huge money to lobby. Effective lobbying is often a case of simply being there and being known to be there: walking the halls of Congress catches the attention not only of Congress, but also wayward federal departments and the media. — For the Hearst-New York Times Syndicate
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Thank you for being the voice of those of us who are too sick to have our voices heard. I do not want to die with ME and leave my young son with memories of his Mom always being sick. He asks me" why can't your doctor make you well?" He has even become very angry and yelled"if your doctor does not make you better, I am going to hit him with my juice box!" If it were only that simple.
thank you,
Donna Richburg
The HHS and IOM – New Strategies
The main lesson from all of this is the American political system (and European political systems) is based on money, campaign contributions, lobbying and wealth centred networks. This sets the agenda and pre-determines all outcomes. The proof of this lies in the fact that our emails, letters and phone calls to Congressmen and Senators and to the HHS Secretary and to NIH and CDC were ignored and fobbed off. It is now very obvious that HHS Secretary Sebelius has been briefed for the last few weeks and months by "advisors". The agenda of these "advisors" is not entirely clear yet. But extrapolation from the Gulf War committe of the IOM gives us some clues. It strongly suggests, but does not conclusively prove, that these "advisors" desire a certain outcome. One which reduces payment liabilities for health insurance companies (to ME patients), reduces government payments for diagnostics and treatments (for ME patients) through Obama-care, reduces government disability payments, maintains the income and bonuses of psychiatrists and psychologists, maintains their somatic syndromes nonsense, increases profits for big (psychiatric) drug companies, and one which continues the lie first formulated by Dr. Straus and then continued by Dr. Reeves of CFS being a so called "fatigue illness", thus preserving the reputation of the NIH and CDC and preserving the careers and status of those in the NIH and CDC. Self interest at every level.
To achieve their desired outcome these "advisors" have conducted their affairs in secret behind the backs of CFSAC and patients and ME / CFS organisations. They then lied about the IOM contract. The "advisors" have adopted a divide and conquer approach ; this was successfully used to build empires in the past. This divide and conquer approach works as follows. They will recruit 1 or 2 ME doctors / researchers and enlist 1 or 2 representatives of one or two big ME organisations in the USA. They will form a small minority on the IOM panel. The IOM will use them to claim that the IOM is inclusive and open to the views of patients, when in reality they will be used as traitors,. The others on the panel will be carefully selected and will all be "yes men" and be told informally that their careers will depend on supporting the "right outcome". The IOM will claim that these people are "independent". They will represent a few fields including immunology, neurology, psychology, psychiatry and physiotherapy and primary care nurses.
The "investigation" itself will be guided carefully by IOM. This guidance will proceed in a certain direction – psychiatry based. As part of their "investigation" they will look to Britain and see whats happening there. The NICE clinics will be examined. CBT and GET will be included in the IOM's "analysis". They will ignore the scientific evidence into the biological causes of ME / CFS and claim there is contradictory evidence, no biomarkers, and no replication studies to verify anything. The "investigation" will presume that there are no biological treatments for ME / CFS and especially no "evidence based" treatments based on double blind placebo controlled trials. How convenient for them that NIH and CDC refused research funding in this area and the FDA blocked certain medicines for ME / CFS. From this they will decide that nothing can be done for ME / CFS patients and that CBT and GET offer the best way to "manage symptoms". The new definition will be a regurgitation of the Fukuda criteria with some some vague language about possible (though not proven) immune dysfunctions, possible (though not proven) infections at some stage of the illness and possible subgroups, with recommendations for further research, which of course will not be funded. The final outcome, which was determined before the investigation began, will be much the same as the vague, psychology centred "multi-system illness" invented for Gulf war syndrome.
The objectives of Secretary Sebelius' "advisors" will be achieved ; this being
an outcome which reduces payment liabilities for health insurance companies (to ME patients), reduces government payments for diagnostics and treatments (for ME patients) through Obama-care, reduces government disability payments, maintains the income and bonuses of psychiatrists and psychologists, maintains their somatic syndromes nonsense, increases profits for big (psychiatric) drug companies, and one which continues the lie first formulated by Dr. Straus and then continued by Dr. Reeves of CFS being a so called "fatigue illness", thus preserving the reputation of the NIH and CDC and preserving the careers and status of those in the NIH and CDC. Self interest at every level.
Mr. King,
Thank you for your kind help in trying to alleviate the ME/CFS beast. It is such a horrible fate to endure. It's unbelievable that the pace of finding help via the US Govt is at such a snail's pace. Lately I have taken notice of the demeanor of Senator Reid, and he has either entered a frail phase of life, or is showing signs that appear to be very similar to mine: a very weak, low energy exhibition. The question in my mind, that is accustomed to recognize "the look" of CFS, is : has Senator Reid acquired ME/CFS? I can attest that this disease is contagious, and he has been in the presence of many of us who are infected.
It would be terrible if he does have the disease, but also a boon as a high-profile spokesperson for our cause. We may never know unless he chooses to speak out.
I just wanted to share my thoughts with you, as I know you care so much for us.
Sincerely,
Thomas Whirple