Wednesday, May 11, 2016

I’d Like Some Water from Flint, Please.

ME research has long deserved real, meaty, physiological research, but will the government ever conduct it? 

If the Centers for Disease Control (CDC) and the Environmental Protection Agency (EPA) can bury the evidence that lead was heavily contaminating the water in Washington, D.C., back in 2004, and again, more recently, in Flint, Michigan—a problem that for all its complexity will probably be far easier and cheaper to solve than ME—why would CDC come clean about the severity of ME and undertake good studies?

Had Virginia Tech engineering professor and environmental hero Marc Edwards not intervened in both water crises—in the latter case, a Flint resident contacted him to help—the public may never have known. How many more children would have suffered irreversible brain damage? How many already have?

Oddly CDC and the EPA have largely escaped scrutiny in Flint and Washington, D.C. Most of the press has ignored the federal government's role in Flint, focusing instead on the evil-doings of Michigan Governor Rick Snyder. 

However, Democratic Congresswoman Eleanor Holmes Norton, who sat on the committee to investigate CDC during the Washington, D.C., water crisis summed it up this way: "The CDC has participated in nothing short of a cover-up that may have harmed families, especially children, in ways that could be difficult to redress."  

The bigger issue is why?  Why did the governmental agencies pretend that the water was fine? Why does CDC continue to dismiss ME as a trivial and psychological problem? Who is telling these civil servants to participate in cover-ups that have caused so much needless suffering? 

With ME, the evidence has long pointed to bureaucrat Tony Fauci, head of the National Institute of Allergy and Infectious Disease. Fauci, you may recall, ignored HIV in much the same way in the 1980s until HIV protestors went after him as public enemy no. 1, with such activists as writer Larry Kramer labeling him a “murderer.” Doesn’t the moniker still apply?  After all, Fauci has long dismissed ME as psychological, while homebound patients are waiting to live and waiting to die.

Unless Fauci himself dies or retires—he is, after all, 75 years old—will anything in the government sector change with ME? Unless private research yields something that the government can’t sweep under the carpet, it's unlikely.

After all, despite the Institute of Medicine’s 2015 findings that ME is a serious physiological disorder, CDC still only lists "counseling, support groups and cognitive therapy" on its website under how to improve “health and quality of life” for those with the disease. This, despite patients and the Chronic Fatigue Syndrome Advisory Committee asking CDC to take down that woefully inaccurate information for many years.

President Obama gave Tony Fauci the Presidential Medal of Freedom in 2008. And during the Ebola crisis, MSNBC talk-show host Rachel Maddow called Fauci a “great American."

Sometimes, I have to hold my head to keep it from exploding.


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Tuesday, February 10, 2015

IOM Report: Remarkably Positive for ME patients

The IOM report is in, and it’s remarkably positive for ME patients. The IOM committee has proposed a new name for ME: Systemic Exertion Intolerance Disease or SEID. OK, it’s a mouthful, and how do you pronounce the acronym? It’s possible that disbelievers will morph the name into: You’re Just Too Lazy to Exercise. Which no one would do had there not been the idiotic Chronic Fatigue Syndrome moniker for thirty years, drumming into the public’s collective head that sufferers had nothing really wrong with them, except perhaps indolence.

All that being said, SEID beats Chronic Fatigue Syndrome by a mile, and it trumpets—at long last—the most critical piece of this complex and catastrophic disease:  post-exertional collapse.

From the press release, issued along with the 235-page report: 

Diagnosis of ME/CFS requires that a patient have the following three core symptoms:

A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue—which is often profound—of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest

The worsening of patients’ symptoms after any type of exertion—such as physical, cognitive, or emotional stress—known as post-exertional malaise

Unrefreshing sleep

At least one of the two following manifestations is also required:

Cognitive impairment

The inability to remain upright with symptoms that improve  when lying down—known as orthostatic intolerance

These symptoms should persist for at least six months and be present at least half the time with moderate, substantial, or severe intensity to distinguish ME/CFS from other diseases

Astonishingly, especially given CDC’s long misplaced obsession with cognitive therapy, the IOM paid little attention to it, the major paragraph registering barely a whimper: “The efficacy of cognitive-behavioral therapy (CBT) in improving cognitive function in ME/CFS patients is unclear. Knoop and colleagues (2007) found a decrease in self-reported cognitive impairment following CBT, yet ME/CFS patients did not differ from a support control group on results of the subscale of alertness behavior of the Sickness Impact Profile (SIP-ab). These results do not preclude the use of CBT to mitigate cognitive impairment in ME/CFS, but do suggest that any effects of CBT may not be measurable by a single scale such as the SIP-ab.” 

Here are the committee's recommendations:

Recommendation 1: Physicians should diagnose myalgic encephalomyelitis/chronic fatigue syndrome if diagnostic criteria are met following an appropriate history, physical examination, and medical work- up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10) that is not linked to “chronic fatigue” or “neurasthenia.”

Even if patients do not meet the criteria for this disorder, clinicians should address their symptoms and concerns. Patients who have not yet been symptomatic for 6 months should be followed over time to see whether they meet the criteria for ME/CFS at a later time.

Recommendation 2: The Department of Health and Human Services should develop a toolkit appropriate for screening and diagnosing patients with myalgic encephalomyelitis/chronic fatigue syndrome in a wide array of clinical settings that commonly encounter these patients, including primary care practices, emergency departments, mental/behavioral health clinics, physical/occupational therapy units, and medical subspecialty services (e.g., rheumatology, infectious diseases, neurology).

One failing of the report is that the recommendations don’t include the pressing need for more research and funding into the disease. But later in the report the committee does touch on this failing: “Remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted. Thus, the committee was unable to define subgroups of patients or even to clearly define the natural history of the disease. More research is essential.”

The inclusion of the word “remarkably” is especially welcome.

The report addresses accurate economic costs of this disease: “The direct and indirect economic costs of ME/CFS to society have been estimated at $17 to $24 billion annually (Jason et al., 2008), $9.1 billion of which has been attributed to lost household and labor force productivity (Reynolds et al., 2004). High medical costs combined with reduced earning capacity often have devastating effects on patients’ financial status.”

The IOM addresses pediatric ME as well.  From the report: “There is sufficient evidence that orthostatic intolerance and autonomic dysfunction are common in pediatric ME/CFS; that neurocognitive abnormalities emerge when pediatric ME/CFS patients are tested under conditions of orthostatic stress or distraction; and that there is a high prevalence of profound fatigue, unrefreshing sleep, and post-exertional exacerbation of symptoms in these patients. There also is sufficient evidence that pediatric ME/CFS can follow acute infectious mononucleosis and EBV.”

Monday, January 12, 2015

PR Firm Will Spread the Word About ME

ME Advocacy, which patient advocate Mary Ann Kindel launched last spring, has raised more than $6,300 so far to hire public-relations agency Crowds on Demand to get the word out about ME. To meet the February goal of another $3,700, patients can donate by midnight January 21st. ME Advocacy’s plan is to raise $26,400 over the next six months, which will cover the PR firm’s costs of $4,400 a month.

With this money, Crowds on Demand will: organize and hire protesters at events; place articles in the media, from print and online to radio and TV; meet with policymakers in Congress to find champions for ME; help with fundraising.

Already, the PR firm has lined up interviews with several smaller media outlets and written a 60-second script for a radio commercial to be aired on Midwest health podcasts. 

Kindel, 51, a graphic and website designer from Cincinnati, Ohio, has been ill since 2000 with severe ME that’s kept her largely housebound.  She decided to start her advocacy organization because of the P2P and the IOM.  “It’s the latest iteration of government’s malfeasance, and most ME patients aren’t healthy enough to protest it themselves,” Kindel explains. “I want to shake things up from a different angle, to try what hasn’t been tried yet.  I believe we need a consistent effort by professionals to get the word out what ME really is, why it needs to be officially recognized, why we need an accurate ME definition, and why we need vastly increased federal funding for research, to be commensurate with diseases like MS.”

To donate to ME Advocacy to hire Crowds on Demand, click here.

Here is a letter from Adam Swart, CEO of Crowds on Demand, detailing what the agency will do for ME patients:  
With a strong Public Relations campaign, the fight to get ME recognized is an issue that we believe will resonate well with the American public.
Complete lack of visibility is the major problem the movement is experiencing. Most Americans do not know about these changing definitions because the issue has not been covered by major media outlets or championed by any high profile policy maker. To be blunt, most Americans don’t know the reality of ME! 
Hiring the innovative PR firm, Crowds on Demand, provides the opportunity to bring concerns about the NIH/CDC redefinitions to the public and get the issue the attention it deserves. The firm is known for an "outside the box" approach that has successfully assisted people and organizations in getting on the map. Unlike many firms, we do more than contact media outlets, we coordinate campaigns from the ground up involving lobbying, demonstrations and media relations. 
Crowds on Demand will contact media, arrange for interviews on high profile shows (particularly morning shows), organize demonstrations and recruit policy makers to join the fight. Moreover, we will assist in the fundraising process by helping to make strategic partnerships with influential organizations and donors. 
We have agreed to work for a heavily discounted rate of $4400 per month including all of these services because we believe in the cause (normally we would charge approximately $10,000 per month for such a campaign). Furthermore, we promise results within 6 months and promise a 50 percent refund if the organization is not satisfied. 
A PR campaign with Crowds on Demand will get the cause on the radar and help the organization raise substantial funds from a donor network. We have excelled in the past working to bring attention to non-profits. For example, Crowds on Demand has worked with a relatively unknown charity in Los Angeles that worked on homeless mental health issues. It was originally unable to fundraise much or get attention. Through its campaign with us, they substantially increased fundraising and got attention in the media. 
We want to bring our success to fighting the HHS’s ludicrous redefinition campaigns and getting ME recognized.