Saturday, June 13, 2009

Re: CFS Patient Groups Cowed by CDC?

After recovering a bit from the bad crash I had from testifying at the CFSAC meetings May 27-28, I was taken aback to read John Anderson's blanket condemnation of all patient advocacy groups in the United States.

First, let me suggest that anyone reading this take a second and go to the two webcasts of the meetings on those days. Just clicking on them will help, because showing interest will more likely convince them to continue broadcasting them. You can easily speed through the boring parts by putting your cursor on the bar underneath the video and moving it faster (and there is a fast-forward function, too). And for the first time you can hear the testimony - some of it heartbreaking. If watching is too much, just click on it to show your interest.

Both videos are available at:
http://videocast.nih.gov/PastEvents.asp?c=39

There are two videos, one for each day, and a podcast - just scroll down past meetings that have taped since then until you get to CFSAC day 1 and CFSAC day 2.

You probably should hear all of Dr. Reeves' testimony from day one - I've had to listen to it for fourteen years and there's no way to describe the insinuations and ill will towards patients it reveals, without listening to it yourself. Note that when asked, Dr. Reeves refused to address the CDC stakeholders' meeting - he simply mumbled something about allowing patients to speak more than once and that therefore you couldn't get an accurate count of just who was dissatisfied, and he thought it was just individuals with strong opinions.

You can then imagine how frustrating it was to testify after Dr. Reeves, but be limited to only five minutes. In the 1990s, we were permitted to ask questions of the formal presenters - but since 2003 we have had to squish our responses in to the same five minutes we had already prepared. Reeves had mentioned British psychiatrist Peter White more than once, so I had pulled up a quote from my hard drive that reflected White's true views on our disease and read it off of my computer while still trying to stay in the five minute boundary.

That effort would have been difficult for me had I been well. It pretty much destroyed me the way I am now (15 months off Ampligen). I could not move after I gave my testimony; friends had to come up and help me back to the wheelchair and collect my belongings. I spent the next day of the meetings on the floor.

I went through that effort because it was important to be there, important to give testimony, important to see us how we really are. I live in Delaware and can take the train to the meetings, so I believe I should be there, no matter what it does to me.

And then I read that we were all too easy on CDC.

Go back to those taped meetings of the CDC. If you pull the little button under the screen to the 3 hour mark (3:00:00), you will be just into Pat Fero's testimony and will catch many of the rest of us, too. So you be the judge.

I don't believe Pat Fero of the Wisconsin ME/CFS Association was "easy" on NIH when she presented hard evidence that they were lying about even the paltry sums being spent on CFS. For that matter, I don't think the Association's president, Caroline Fibrence was overly gentle, either. She spoke about the problem of reasonable accomodations for our illness at HHS. As we all were, she was taken aback by Dr. Reeves comments and criticized the short notice we got for the stakeholders' meeting. She would like to have gone, but two weeks was not enough time. "That's not how you do it if you really want to hear from people, and I consider it a slap in the face." Dr. Reeves "sounded nice," but was just reporting things that happened a long time ago. Caroline has a background in epidemiology, and criticized the way the paltry sums allocated for "CFS" is spent on other projects. "Too little, too late, and needs to be far more focused."

Meghan Shannon, of the original Medical Professionals with CFIDS/ME and "Our Bodies, Ourselves," followed with a critique of the entire NIH/CDC program, starting with the invention of the useless name "chronic fatigue syndrome." Shannon said "nobody in this room has chronic fatigue syndrome because there is no such thing." We have Myalgic Encephalomyelitis (M.E.), post-polio syndrome, cardiac conditions, cancer, or need some other correct diagnosis. Shannon also had documents showing that the Social Security Administration had tried to track CFS in the early 1990s by using the word "fatigue" as a marker. Instead of finding CFS patients, they came up with a lot of patients who had applied for disability because of cardiac disease and cancer. What a coincidence.

Now - this is just a TINY BIT of the testimony given during those two days. I was too sick to report on the whole meetings, as I have sometimes been able to do. You have to go to the website yourself, and watch it. There were three windows for public testimony: noon and 4 pm on the first day; 2 pm on the second day. (That's roughly 3 hours into the first day and at the end of the first day, and at the end of the second day.)

You'll find Pat's testimony at precisely the 3 hour mark (3:00:00) on the first day's tape along with several more of us. Pat got cut off abruptly after 5 minutes 30 seconds, but one of the public members later read more of her evidence about NIH's misallocation of funds into the record.

I don't think any of us who testified were "easy" on the government - nor had we been during years of CFSCC and CFSAC meetings that Mr. Anderson certainly didn't show up for.

My current written testimony can be found on my blogsite. I folded in both the submitted written testimony and the essay entitled "Orwellian NewSpeak", along with the quote from Peter White, into my five-minute oral testimony:

http://cfsknowledgecenter.ning.com/profiles/blog/list?user=32qw535d82un8

I have to agree with one thing that Mr. Anderson said - three years ago, when I first testified about the skewed data sets being produced by Reeves' new questionnaires, modeled after psychiatrist Simon Wessely's, the CFIDS Association of America was still cooperating with CDC on their public relations campaign. (That's where the 4-7 million estimate came from - it includes patients who are mainly a bit depressed and do not have CFS-Fukuda.) The PR campaign was lovely, but the only source for information was CDC's website, and if that's where you went for information, you learned "there are no tests and there are no treatments."

The CAA is now fully aware of the problems with CDC, I believe. They were just late coming to a conclusion many of us reached years ago, and unfortunately helped publicize the definition and questionnaires that are now such a problem. I would like to see them do more overtly to put a stop to the use of those questionnaires.

From years of listening to his testimony and reading his publications, I knew by 2006 that Dr. Reeves was no longer using CFS-Fukuda. Those questionnaires that he claims "operationalize" CFS-Fukuda diagnose something very different. As Dr. Leonard Jason's study has shown, the questionnaires leave out those who are seriously ill, such as myself and the original cluster outbreak patients, and instead include patients who should be getting treatment for depression, not "CFS". It is imperative that these questionnaires no longer receive the stamp of approval of the U.S. federal government. It is imperative that all who participated in that program be removed from CFS studies at CDC and NIH.

As I mentioned, I have testified about much of this before - about my fears that CDC and NIH were too cozy with British psychiatrists, about the failure to identify subgroups through biomarkers, and about poorly designed studies that should have been replaced on the CDC's website with better studies conducted off-campus.

Much of my previous testimony is available here:
http://www.cfids-me.org/marys/essays.html#cfscc

We used to get 50-100 in the audience at the meetings in the 1990s. In contrast, very few patients attended the CFSAC meetings between 2003 and 2008, after the rules changed.

It has been frustrating to have only five minutes to speak, frustrating to have to listen to misstatements and not be permitted to question them, and frustrating that the minutes would not reflect word-for-word what happened in those meetings.

Just the addition of video-streaming on internet has been a great change from the past.

But the testimony was a change, too. I believe we all know what is on the line. If CDC is permitted to go through with their plans to bring us in line with the UK's "NICE" guidelines (which Reeves actually mentioned!), our treatment will get even worse. Yes, that is actually possible.

At THESE meetings, the May 27-28, 2009, meetings, even the IACFS/ME (International Association for CFS/ME) called for an end to the current leadership at CDC with regard to CFS, an end to the questionnaires, and the use of Centers of Excellence and outside experts. They were not particularly easy on CDC or NIH.

I do not belong to a "national" patient advocacy organization in the U.S., but that does not mean I do not have organizations that speak for me. There are a number of excellent state and regional patient organizations out there. Both Pat Fero, of the Wisconsin CFS-ME Association, and Rik Carlson, of the Vermont CFIDS Association, joined me and Meghan and other advocates in writing a report for the Obama-Biden transision team on health care reform last December. It was chosen to represent my home state of Delaware on the White House's health reform website. You will find it here:

http://www.healthreform.gov/communityreports/delaware/delaware_19711.html

The Vermont CFIDS Association and the New Jersey CFIDS Association have each sponsored medical students to encourage more information about the biomedical research on our disease, and how to treat patients. PANDORA, which is mainly out of Florida but is becoming more national, testified at the CDC Stakeholders meeting and at the CFSAC, and both times made it clear we need the CDC's program on CFS to end. PANDORA has also been very creative in finding different organizational tools - a walk-a-thon with wheelchairs (and healthy wheelchair-pushers), an E-Bay auction going on right now, a contest for best video, and more.

There are also strong patient organizations in Northern Virginia, Massachusetts, Connecticut, New York, Charlotte NC, Chicago - way too many for me to mention.

And, of course, it was patients organizing in Nevada and California that created the HHV-6 Foundation, which has already held two pathbreaking international conferences on viruses and ME/CFS. (Note: Dr. Reeves was invited to last year's meeting in Baltimore but he refused to attend.) For information, see: http://www.hhv-6foundation.org

The same collection of patients helped get the Whittemore-Peterson Institute off the ground, with the driving force the Whittemore family, but a lot of work all around. The WPI is already finding success working with micro medicine, genetics, immmune and viral markers. They have a number of young scholars who are actually enthusiastic about our disease! Imagine that. For information, see: http://www.wpinstitute.org/about/about_mission.html

All of this was accomplished by patient organizations despite the apathy of the CDC and FDA.

I know that these patient organizations work hard with their own state legislatures and federal representatives, and an organization consisting mainly of patients and their caregivers has very limited resources. My own attendance at the CFSAC since 2003 was sort of a promise to my friends, because at the time I was better due to Ampligen and, after all, I could at least go down and report what went on. I can understand why active patient advocacy groups were reluctant to spend the money and the time to go to Washington for meetings where our input was summarily dismissed.

I would like to see an umbrella group form of these state and regional organizations, with each including a representative and not having one person in charge, paid or unpaid. I think that would be the quickest way towards a true national organization that would represent the grassroots, and in the future perhaps we can see more participation in the CFSAC meetings from those outside the DC area.

Finally, I support both InvestinME, an organization in the UK run by parents of patients and dedicated to information on Myalgic Encephalomyelitis - see <http://www.investinme.org> - and the National ME/FM Society of Canada - see <http://www.mefmaction.net/Default.aspx?Page=home>, to whom we owe the Canadian Consensus definition and guidelines.

I have met overseas advocates through the IACFS/ME, and as it increases its international visibility, the U.S. patient advocacy community can hopefully be brought into the history of M.E., and both problems and solutions from around the world.

So I also have hope for a direction I would like to see advocacy take in this country and the world.

And if I had one wish, it would be for the U.S. Congress to hold an investigation into what really happened with "CFS" research at CDC and NIH. If it ever gets opened up, they will find a public betrayal even worse than what happened at Justice or State.

All those state organizations out there: call on your representatives in Congress and tell them we need a congressional investigation into how British psychiatrists came to control the direction both CDC and NIH have taken towards CFS. We need an investigation into precisely who gains from the popular belief that CFS is a minor illess, if an illness at all - and who gains from the concept that CFS is a "medically unexplained syndrome", or MUS. Someone is gaining. It is not us.

As for whether patient advocates have stood up to CDC and NIH, all Mr. Johnson has to do is watch the video of the CFSAC meetings himself, and he can see that there are patient advocates who have always been there, speaking truth to power whether power wanted to listen or not. We haven't gone anywhere, and we don't intend to.

Mary Schweitzer

- - - -
CORRECTION:
Reading it again just now, I see that after writing CDC and NIH so many times, I once wrote CDC and FDA where I don't think that makes much sense. Oh well, too difficult to fix!




Thursday, June 11, 2009

The value of opioids

Chronic Pain Guidelines Suggest Opioids for Elders

            Few people think twice about taking aspirin or ibuprofen. But for those 75 and older, the high doses needed to treat chronic pain may be so dangerous that patients may be better off taking opioids instead, according to new guidelines issued by the American Geriatrics Society.
* * *
The only thing I got from taking Advil was an ulcer. 
 
At one point, the doctor told me at the beginning of the appointment to stop taking it because of the ulcer, and at the end of the same appointment, when I reminded him I needed a prescription for the pain, he told me "take Advil", sprinting out of the room before I could say "you just told me to NOT take Advil".
 
I've finally gotten a prescription, which I use as little as possible, but it IS nice to be able to take something to relieve the pain when I desperately need to work or sleep.





Wednesday, June 10, 2009

Magnesium for Energy Production and other Helpful Hints

If I could recommend only two things, it would be magnesium and potassium.  Here's some data from ProHealth:
 
 
 
De Meirleir's H2S theory & test.   Web version: prohealth.com/em/EM061009C     Font Size:   A   A   A
http://www.up0.net/c.html?rtr=on&s=d7m,8ttp,6k,1nr,a0w9,7xo1,2hxa ME/CFS HealthWatch     June 10th, 2009
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http://www.up0.net/c.html?rtr=on&s=d7m,8ttp,6k,2a0n,e0jl,7xo1,2hxa
 
 
Heard 'Round the World: De Meirleir's H2S Theory of ME/CFS & Home Test

Dr. Kenny De Meirleir fired up the ME/CFS world on May 28 & 29 with his news of a theory featuring gut dysfunction, elevated hydrogen sulfide (H2S), and a test that can be ordered online. See slides, summary of scientific article, commentary.




ARTICLES, EVENTS, SOLUTIONS view more http://www.up0.net/c.html?rtr=on&s=d7m,8ttp,6k,3uhh,57qd,7xo1,2hxa
Testimony to CFS Advisory Committee on H2S Hypothesis of ME/CFS
Working to find a cure for her daughter, Marian Dix Lemle conceived this hypothesis and shopped it around the world's experts. Dr. De Meirleir pursued it.

Magnesium - Essential Nutrient is Key to Mitochondrial ATP Production
A mainstay of the ME/CFS doctor's toolkit, Mg is necessary to produce energy, for neuromuscular and orthostatic health, and hundreds of enzyme functions.

Landmark May 27-28 CFSAC Meeting - Watch Video Online
The videocast that ME/CFS patients & advocates watched is archived for easy viewing online. Speakers suggested new CDC research plan focus & direction.

On May 28, Opportunity Knocked - Will the ME/CFS Community Respond?
Knocks have to be answered for the right doors to open, says CFS Report editor Craig Maupin. Add your comments by June 30 to help things change.

European Think Tank to Generate Validating ME/CFS Research, Education
A pan-European organization for ME/CFS research will meet June 13 to initiate plans for 'large-scale research' to validate evidence of ME/CFS's organic basis.

Vitamin D May Lessen Age-related Cognitive Decline - Eight-Nation Study
Men with higher levels of D perform consistently better; edge increases with age.

An ME/CFS Doctor's Coping Tips for Cognitive 'Multi-Tasking'
With brain fog, everyday events such as food shopping are anything but simple, writes Dr. Gudrun Lange. She has tips for handling activities in a different way.

New Hope for Autoimmune Disease Emerges from Chinese Herbal Treasury


RESEARCH ABSTRACTS view more http://www.up0.net/c.html?rtr=on&s=d7m,8ttp,6k,7tms,c98e,7xo1,2hxa
Low B12 is major depression risk for women - large population study
Low B12 boosts depression risk 44%; low folate (B9) doubles it in male smokers.

Below-normal blood volume typical in ME/CFS patients - Klimas, et al.
ME/CFS groups had lower total blood, plasma, and red blood cell volume.

Distinctive measures of cognitive impairment demonstrated in ME/CFS
Importantly, they are clearly independent of psychopathology.

Backache, headache, leg weakness/tingling may be undiagnosed POTS
60% of those with severe orthostatic hypotension didn't have 'typical' symptoms.

Product Spotlight
Magnesium Plus - Converts Carbs & Protein into ATP
Magnesium is a vital nutrient necessary for proper muscle, nerve and enzyme function. This essential mineral acts as a coenzyme and is utilized by the body to help convert carbohydrates, protein and fat into energy. read more
http://www.up0.net/c.html?rtr=on&s=d7m,8ttp,6k,eeu9,lvi,7xo1,2hxa

Post-exertion fatigue linked to poor 'stress-response' protein production.

Gulf War Syndrome Caused by Chemicals that Inactivate Crucial Enzyme

Physiological measures identify limited movement pattern in ME/CFS

Poor diagnosis of 'early Lyme-like' cases points to need for education


FROM OUR READERS  
Comments & Suggestions
· H2S test by mail?
· Forwarding jokes
· Diagnosis, mycoplasma
· Causes of gut problems
· Heel pain help
· IiME conference report

· Critics of H2S theory
· Patients of De Meirleir
· Strong SSDI case tips
· MS problems, like ours
· CFSAC meeting a first!
· ME/CFS parent advocates

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WEEKLY INSPIRATION  
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Hey Jude! - Trafalgar Square Sing-Along
    - thanks to Holly

Share a smile - submit your own favorite Fun Link



 
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Tuesday, June 9, 2009

Dan Peterson's Presentation in Sweden

Presentation by Dr. Daniel Peterson to REM Goteborg(Swedish ME patient org.)
Gothenburg, Sweden Nov. 25, 2008

http://video.google.com/videoplay?docid=1822629466699462451&ei

Nov. 25 Professional Conference slides-
http://rme.goteborg.me-info.nu/pdf/dp25.pdf
Nov. 26 Patient Conference slides-
http://rme.goteborg.me-info.nu/pdf/dp26.pdf
 






 

Decision Makers Differ on How to Reshape Nation's Medical Services

(Excerpts)
 
Nowhere else in the world is so much money spent with such poor results.
On that point there is rare unanimity among Washington decision makers: The U.S. health system needs a major overhaul.

For more than a decade, researchers have documented the inequities, shortcomings, waste and even dangers in the hodgepodge of uncoordinated medical services that consume nearly one-fifth of the nation's economy.

Pockets of medical excellence dot the landscape, but at least 100,000 people die each year from infections they acquired in the hospital, while 1.5 million are harmed by medication errors. Of 37 industrialized nations, the United States ranks 29th in infant mortality and among the world's worst on measures such as obesity, heart disease and preventable deaths.

The Institute of Medicine estimates that one-third of all medical care is pure waste

They envision a health-care system that guarantees a basic level of care for everyone, shifts the emphasis to wellness and prevention, minimizes errors, and reduces unnecessary and unproved treatment.

On average, Americans receive the recommended, proven care 55 percent of the time, according to Rand studies. Sometimes, doctors or nurses overlook a basic but critical step

Ten years ago, in its landmark report "To Err is Human," the Institute of Medicine estimated that 44,000 to 98,000 people die each year from medical mistakes, highlighting the need for improvement. Since then, the tally has risen, said Janet Corrigan, president of the National Quality Forum, a nonprofit membership organization that promotes quality standards.

"We now know estimates of those who die from hospital-acquired infections is upwards of 100,000," she said. "Many of those, if not most, are avoidable and preventable."

In today's system, "we don't ration care, we ration people," said Donald M. Berwick, president of the independent Massachusetts-based Institute for Healthcare Improvement. "We know that if you are black and poor or a woman, there are all sorts of effective interventions you are not going to get."

* * *

And if you're a woman with CFS, you almost certainly will not get effective interventions, because the doctors will ascribe all your problems to psych/emotional reasons and simply refuse to do any of the tests that would prove there's a biological reason for your symptoms.

In 1987-88, my boss and I had similar symptoms; mine were much worse.  He was put on a plane and flown to the far end of the state for more tests.  I was told to "tell your husband you want to quit your job and be a housewife"; there was no need for more tests, I was a woman and women don't want to work. 

They can tell you all they want that men and women get the same medical care, but when it comes down to it, we don't.  My boss could not believe that they had not tested me for the same things he was tested for.  He especially couldn't believe that I was told I was a hypochondriac and simply too lazy to work.

Don't believe me that it's still the same story 20 years later?  Google up the statistics about how many women die of their first heart attack because ER doctors brush them off, attribute their symptoms to anxiety or digestive issues, and prescribe entirely wrong medication.  Most men survive their first heart attack, because they're taken seriously and treated promptly.

My now-permanent disability was ENTIRELY preventable if I'd gotten the right pills in the critical early months, instead of having to prove that every one of the zillion brands of anti-depressants didn't work for me before anyone would believe that my real problem was that pain was keeping me awake, and the lack of sleep had reduced my immune system to non-functional.

But I was a divorced woman, so there was no need to x-ray to find a source of the pain, there was no need to do a cortisol test or test the status of my immune system or a sleep study, because the only thing that could possibly be wrong with me was depression over being divorced.  Never mind that I kept reminding them that the same symptoms were there when I was married, and had started months before the wedding.  This had nothing to do with my marital status.

Eventually, x-rays were done and found three previously-unknown fractured vertebrae.  A C-Reactive Protein test was done and was "off the charts".  Someone asked me to keep a sleep diary and decreed that I had "severe" sleep problems, for which I was given strong sleeping pills that knocked me out despite the intense pain.  But the problem was the years it took to find a doctor who would actually listen to my symptoms/history, rather than diagnosing me in the first few seconds with "divorce".  It was fast and easy to diagnose, but it didn't help me because it was the wrong diagnosis and the prescriptions were the wrong pills for what was actually wrong.

I very easily could have been one of the nearly 100,000 people a year who die from medical mistakes.  I was actually given a prescription that could have killed me; when I told a pharmacist my past experience with a related drug, he refused to fill the prescription, and another doctor warned me that if I had any intention of trying it, I needed to demand that I be admitted to a hospital first so that life-saving personnel and equipment would be immediately at hand when the inevitable bad reaction occurred.

 

 

Sunday, June 7, 2009

The truth about Medical Insurance

 
60%+ of bankruptcies were caused by medical bills
 
78% of those were people who HAD medical insurance but were bankrupted by bills for things that weren't covered
 
It's easy to say "won't happen to me", but there are a lot of things that DO happen to people who think it'll never happen to them.  I ate a healthy diet, exercised daily, had no bad habits -- I was the last person you'd expect to get sick, much less something that would affect me the rest of my life.
 
As for insurance, after I lost my job, I converted my employer-paid policy to an individual policy with the same company.  They haven't been able to find an excuse to cancel my policy for fraud because everything on my application was accurate, but after I used the insurance to pay for an expensive test, they have rewritten the policy to the point that it covers essentially nothing. 
 
If you call the company and ask what the policy by this name covers, wanting to buy the policy, you'll be told it covers all sorts of things; it's apparently just my individual policy that's been revised to cover nothing.  Since I'm not part of a group policy, they can do whatever they want to me, and there's very little I can do about it.  I'm now in treatment for a pre-existing condition, so any other insurance company either won't insure me or will only insure me for an unaffordable premium. 
 
One of my business partners is looking into getting a group policy for the two of us, but the problem is, we BOTH have pre-existing conditions, so the price on that may be just as ridiculous as on an individual policy.
 
This is why we need the government to step into the health insurance business.  The insurance companies have guaranteed that if everyone is required to have coverage, they will no longer refuse to insure people with pre-existing conditions, and that our price for coverage will come down. 
 
The government has agreed to subsidize premiums for people who don't earn enough to easily afford them, if universal insurance is mandated.  From a middle-class or upper-class perspective, that may not be what you want to hear, but for those who would otherwise need to choose between insurance and food or rent, it's crucial.  And with the economy the way it is, you can fall from middle-class or upper-class to below-poverty-level very easily -- most people are just one or two paychecks away from financial disaster.
 
That's the reality.  It CAN happen to you.  What will you do if it does?  If, like most of us, your health insurance is tied to your job or your spouse's job, what will you do if you lose your job?  COBRA only requires 18 months of continuation coverage; if you can't get a new job, or your new job doesn't provide insurance, then what?
 
 
 
 

Call for Change in CDC Leadership

We now have easily printable letters, addresses and email addresses
available on this page of the www.name-us.org website:

http://www.name-us.org/AdvocacyPages/OtherActions.htm#Support%20the%20call%20for%20change

Lois Ventura
Co-founder
National Alliance for Myalgic Encephalomyelitis
www.name-us.org