CFS Un-Tied Blog

Entire meeting recorded. Check out at:

http://www.youtube.com/user/Khalyal#p/p

Thanks everyone who participated in the CFSAC Video Project for this meeting.   

Special thanks to Carla W, Chris N, Chris D, and Heidi B.  You guys rock!

K

Advocacy | Comments (1)

Will we stand by and watch lightning strike children?

The Lightning Process has been a controversial program, promoted in some quarters as a “treatment” for CFS and/or ME. Though the claims made by Phil Parker, developer of the LP, indicate that it is based on the acknowledgement of a biological illness, the “treatment” itself is by all accounts based on retraining one’s thinking process. This indicates by default that we thought ourselves into illness in the first place, much like the Amygdala Retraining program premise does.

The Lindbury Trust and Ashden Trust have recently awarded a 164,000 pound research grant to a team led by Dr. Esther Crawley, for a study to begin in September of this year. The study will investigate the effects of the Lightning Process on 90 children between the ages of 8 and 18.

I find this horrifying.

No clinical trials have been conducted regarding the Lightning Process on adults. The program is controversial at best, and in the opinion of many, expensive and harmful. I find it unconscionable that the process is being funded for study at all, and heinous that its first intended guinea pigs are suffering children.

What is the Lightning Process?

If one were to ask Phil Parker himself what the Lightning Process was, one would most likely come away without having any real idea. He doesn’t say, exactly.

His website, www.lightningprocess.com, describes it vaguely as a seminar that teaches you how your brain and body work together, and how you can use this connection to change your health and life. Mr. Parker’s own qualifications for treating (or coaching you out of) such a serious illness as ME are mind bogglingly inadequate. He markets himself as a Hypnotherapist, Executive Coach, and Master Practitioner of NLP, Osteopaths and Healers.

By some accounts, people in the UK have spent upwards of 600 pounds on the program, and are asked to sign a confidentiality contract to prevent them from divulging the details of the program. Some who have said publicly that they didn’t recover have reportedly received letters threatening legal action.

One poster informed us on November 4, 2009, that, “Private Eye magazine has published the following in their ‘Legal News ‘ section in last weeks Private Eye. Issue number 1248. Page 10

‘M.E sufferers were stunned recently to recieve threatening letters when they posted their views on the Lightning Process, a program that alledgedly produces ‘amazing results’ for people not only with M.E but ‘anxiety, panic attacks, overeating, low self esteem and guilt too.

When sufferers started reporting they had paid £600 for a course that did not work for them, they received warning of defamation proceedings if they did not recant.’

http://cfsknowledgecenter.ning.com/profiles/blogs/let-the-spin-begin  (you may have to log in)

But here’s an interesting website, where some people have managed to speak out: http://www.sayer.abel.co.uk/LP.html- LP Doesn’t Work For Me.

One participant gave the following succinct description of the program:

The Lightning Process is:

Public Outcry

There has been public outcry from within the CFS and ME communities on both sides of the water about the upcoming study. And yet one of our own, Cort Johnson, has seen fit to post the following article: http://www.forums.aboutmecfs.org/entry.php?364-An-MD-on-the-Lightning-Process …

An M.D. on the Lightning Process

..in which he shares with us the opinions of one Dr. Frivold, who quite obnoxiously characterizes some questionings about the integrity of the LP program as “malignant comments”, and goes on to congratulate Cort as being instrumental in the Frivold family’s decision to pursue the LP as a viable treatment:

“Cort, I have to applaud you for the open-mindedness you have demonstrated on your website. It was in a large part thanks to your reviews of the Amygdala program that both Berit and I were convinced of the potential and took the chance to invest in the training. Berit chose the LP because she was ready for an accelerated program, and the reports that patients had made full recoveries and were not dependent on long-term therapy or nutritional supplements etc”.

The most interesting and telling reading regarding this article are the ensuing commentaries made by members of the Phoenix Rising community. These are well educated, well informed, and mostly very ill people who have taken offense to the entire presentation of the article, and yet have responded with point-by-point factoids and well thought out concerns. I see no evidence of the supposed malignant and derogatory commentary Dr. Frivold would have us believe occurs.

Closing Comments – Just My Opinion

I do not wish to take anyone on head-to-head. It has not been my desire to be anything less than respectful to everyone in the ME/CFS communities, regardless of differences of opinion or dispute of facts. To date, I have refrained from singling out anyone in a confrontational manner, past the point of debate over the issues themselves.

But my line was drawn in the sand when XMRV hit the scene. Zero tolerance for bullshit, I said, from this point forward. And so on this marker, I must stand, and declare that I smell manure. Cort Johnson, I am crying foul. We haved butted heads on issues before, and you have vehemently chased me down over CAA policy disagreements. I have for the most part walked around you, and left you to your own opinions and revisionist histories, no matter how harmful.

But now we are not talking about policy. We are not talking about politics. We are talking about children‘s lives, and here I take a stand.

Advocacy | Comments (14)

I have been experiencing the typical surges of brain fog that unfortunately come with this disease, although I don’t believe fog is the word I would use. Perhaps “disenfranchisement from self” would be a better description, a wrenching and forced disconnect from the tools that should lay readily at my hands; tools such as the ability to maintain thoughts long enough to connect them and come to a conclusion.

Fortunately, when I have full access to my toolkit, I write. I write to others who suffer as I do. I write to government entities. I write to the medical profession. But mostly, I write for myself, so that I can burn a record of my thoughts on a platform that won’t disappear as readily as the canvas of my own mind does from time to time.

And so, in the face of my current disenfranchisement, I want to share with you some things I have written before, but have not said to this particular gathering.

Not too long ago, I had pondered the question, “When did it become all about me? Not M.E. the disease, but me the person. When did I become the center of my universe? When did every waking moment become a devotion to the damned disease that has come to define my very being?

It became all about me the first time I couldn’t get out of bed when I wanted to. It became all about me when I could not get to the bathroom by myself.

It became all about me when I had to give up my career, my house, my cars, and my family life for the greedy and unwanted tyrant that has hijacked my life.

It became all about me when I realized that the government, my doctors, my family and my friends took no interest whatsoever in the history of my illness and how we got to be a tribe of disenfranchised sick people with a disease that might as well be leprosy.

It became all about me when I realized I was on my own. And then, my journey began.

All of my life I had been an upstanding citizen, a believer in the process, a truster of doctors and government agencies, and a stalwart bastion of “doing what’s right”. I always thought that the “moral code” was mostly universal with a few sad exceptions, and that policies that were driven by hidden agendas or studied ignorance were anomalies of human nature. I managed to get into my 40’s without being disassociated from my delusions. Then I fell into the black hole called CFS.

As with any black hole, this one has an “event horizon”, the boundary of a region of space/time where it is impossible to escape infinity, and beyond which no information, including light, can reach the distant observer. The CFS Event Horizon seems to consist of faux advocates and government agencies, quackologists and psychologizers, big pharma and snake oil peddlers…all of who have some sort of apparent vested interest in minimalizing this disease and at the same time, keeping us from recovering from it. The event horizon is a paradox of strange behavior and anti-logic.

But once one has breached the Event Horizon and is inevitably and permanently sucked into the black hole, one’s perception of reality changes forever. It’s kind of like taking the red pill and disassociating from the Matrix, with a finality that is irreversible. One tries frantically to scream a warning to those still on the outside…those who are newly sick, or not inducted into the political abyss. But that same “event horizon” that kept you from seeing into the Black Hole in the first place….keeps those on the outside from seeing or hearing YOU.

After I got sucked into the wormhole of CFS and spent considerable time screaming at the unkind gods who would allow such a twisted charade, I started to notice that there were many others floating out here in space with me. Many others. In fact, vast numbers of others. Each and every one of these people had already been through what I’d just experienced. Each and every one was stripped of any illusions of what had happened to us. Each and every one was fighting a fight, alone but in the company of many. I finally realized that I may be alone, but I was alone with a lot of other people.

We had a vibrant end to 2009. The XMRV research and surrounding events brought a new life into an old fight. The last CFSAC meeting was stunning, driven by testimony from Dr. Peterson, Annette Whittemore, Dr. Coffin, and Dr. Bell.

Many of us, early on, voiced strong concern about riding the momentum and being prepared for history repeating itself in the face of pseudo-replication studies and a culling of X-positives from the herd. As it turns out, these concerns seem valid. We have had three very controversial pseudo-replication studies and a pursuant online firestorm of speculation and supposition about the validity of the WPI XMRV studies, addressed by Annette Whittemore in no uncertain terms in her publicized letter to Professor McClure.

Canada has recently taken the position that there is no point in waiting for the dust to settle, and recently halted allowing CFS patients to donate blood due to possible XMRV contamination. New Zealand has followed suit, and the Australian Red Cross is in the process of risk analysis.

To this committee, to the government entities involved, to the medical community, and most of all to my fellow sufferers, I say “Let the fight begin”. If I were to issue a call to arms, it would co something like this:

Don’t let your suffering be your cloak. Instead, let it be your shining spear of righteousness, your sword of justice. Use it without prejudice. Set your eye on the truth and do not waver.

The time for talk is over. It is time to DO. No matter how you fit into this puzzle, whether you are a sufferer or a committee representative, let’s DO. Support the science. Donate to the WPI. Clear the path for the WPI to receive funding. Actively pursue information and updates on XMRV. And if you won’t, please get out of the way.

We are sick and out of time, and no longer have the patience for “can’t”.

Thank you for allowing me to “speak”.

Khaly Castle

Advocacy | Comments (11)

Heidi Bauer is a patient advocate who works relentlessly on the behalf of the CFS Community. She has written the following in an effort to help fund the WPI. I am so proud to know her!

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Well, I gave it my first shot. I wrote a letter to the Bill and Melinda Gates foundation hoping to persuade them to help the WPI. I will also be writing to other organizations hoping to drum up some interest. PLEASE write to anyone you can think of to help our cause. If you feel you are not up to writing, mention it to one of the more experience advocates, or feel free to let me know too. I’ll try to write it up for you. Here is just my example of a formal letter looking for funding for the WPI. ~ Heidi Bauer~

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To Whom It May Concern,

My name is Heidi Bauer and I am a patient advocate for Myalgic Enchephalomyelitis (M.E.), or Chronic Fatigue Syndrome as it was erroneously named in the United States. This disease has no boundaries and effects millions world wide. There have been known outbreaks of this disease, which affects children and adults alike, often starting with a flu-like virus, dating back as far as 1934 in the UK. The disease has been psychologized by the CDC, doctors in the UK, and researchers in the Netherlands to the point of reducing true biological research to almost nothing. Only the most dedicated of researchers who have continued to find biological evidence of immune and neurological abnormalities fight to continue their studies, despite paltry grants and meager private funding.

In October of 2009, the Whittemore Peterson Institute in Reno, Nevada along with the National Cancer Institute and the Cleveland Clinic, reported finding a novel retrovirus called XMRV present in up to 98% of the ME/CFS patients they studied. This was published in Science Magazine, one of the most influential scientific journals in the world. The original data found XMRV in 67%, but with further refinement of testing techniques, they were able to find evidence of the retrovirus in 99/101 patients tested. It was also found in 3.7% of 218 healthy controls, which was particularly alarming to the national blood banks. Because of this research and the catastrophic consequences of not halting blood donations sooner when HIV arrived on the scene, Canada has banned blood donations from ME/CFS patients. New Zealand has followed suit, and Australia is considering doing the same. The Science paper proved this to be a contagious retrovirus and experience with both ME/CFS patients and XMRV in animals provide further concern for lymphomas and leukemias. (http://www.sciencemag.org/cgi/rapidpdf/326/5952/585.pdf?ijkey=m3wzKT4yJqEyk&keytype=ref&siteid=sci) Commentary on this ground breaking study by world renowned retrovirologist, John Coffin, attached as .pdf below.

Unfortunately, all world governments have stood in the way of innovative research like that from the WPI. Annette Whittemore designed the Whittemore Peterson Institute when she realized that the government was doing nothing over the last 25 years to help her daughter, Andrea, who has been severely ill since she was 11 years old. Like most visionaries though, she realizes there are others in desperate need of high quality medical care for this poorly understood disease and advocates tirelessly for five centers of excellence to open around the US to serve the patient population. Despite aggressively appealing for federal grants, or even grants from patient advocacy groups, the WPI has been unable to get the federal funding needed to continue this important follow up research. The philosophy of ME/CFS patients just needing to exercise, eat right, receive cognitive behavioral therapy and push themselves has been a mainstay in the medical profession for so long, that there are serious obstacles to funding in the government sector. This is why I am writing to the Bill and Melinda Gates Foundation to ask if you may consider looking into the WPI. They are a 501(c)(3) organization. (www.wpinstitute.org) They are professional and eager to share their discoveries with the world. We finally have momentum in finding out what is making people so seriously ill, often bed ridden for years, even decades. They often go on to develop cancers, heart issues, and the failure of various organs. Their weakened immune system leaves them open to opportunistic infections. This is not an all-in-your-head disease and the WPI is working around the clock to finally put an end to that myth.

I understand you have a grant for neglected diseases, but I also see that you do not give grants for research into diseases in developed countries. While this is not a disease limited to developing countries as you seem to require, it is a world wide issue. There have been criminal injustices in the researching of this disease comparable, or worse, than the way Multiple Sclerosis was classified as “female hysteria” for years until science proved otherwise. I beseech you to at least reconsider finding some way to support the WPI. I will find the appropriate people to write a grant if I know there is a valid avenue for applying.

If you read nothing else, please follow this link to the New York Times article that summarizes some of the history and obstacles that still stand in the way of productive research into ME/CFS. It is written by an investigative journalist who also suffers from ME/CFS and made it her life’s work to uncover the CDC’s dishonesty and corruption that plagues the history of research into ME/CFS. (http://www.nytimes.com/2009/10/21/opinion/21johnson.html?pagewanted=1&_r=3)

I thank you for your time and look forward to your response.

Sincerely,

Heidi Bauer
(address and phone numbers removed for posting)

(Coffin’s remarks not attached here)

Advocacy | Comments (4)

This was written and posted by Lisa Simpson, who gave generous permission for us to share it here. While government obfuscates and pontificators pontificate, this is what’s happening to an entire population of dreadfully sick people.

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 I read somewhere recently that ME patients have an average life span of 55 years. I was 23 when I got sick. I’m almost 49 now. I’ve been sick for so, so long… I’m tired of it and, apparently, running out of time now.

I don’t have time for scientific pontificating and posturing and, frankly, I don’t care whose reputations or careers are at stake.
The people who look likely to be proved wrong in their assertions or who were actively involved in preventing the advancement of knowledge about this illness (and we all know who they are) should be big enough to fall on their swords now, get out of the way and let good science progress. It’s the right thing to do. They’ve had their chances and blown them along with all the money they were given. There are people like me in the world who have been sick for 25 years plus. I would have liked to have had a career too, you know. Instead, I’ve been searching for a cure for 25 long sick years while people in high places took millions of dollars in government grants but somehow didn’t have a budget for things like, say, domestic flights to check the validity of the findings of competent scientists who were doing their best to uncover the cause of my illness. They apparently thought the money better spent staying in their offices, re-branding the WHO-classified neurological illness Myalgic Encephalomyelitis as chronic fatigue syndrome, posting ‘fatigue’ jokes on their noticeboards for the entertainment of their colleagues and developing ludicrously implausible theories as to the cause of their newly invented syndrome. This is what was going on all those years while people like Kay Gilderdale watched their daughters die a long slow death and while people like me watched the best years of their lives slip away along with their marriages, homes, careers and social lives. I’m a bit pissed about that.

I feel rather like a holocaust survivor at this stage of the game and, like those severely traumatised people, I don’t have much time for holocaust deniers – people who deny facts in the face of overwhelming evidence to the contrary.
After 25 years of the worst kind of sickness, I really, really don’t need to hear from ineffectual people in high places that XMRV may not have anything whatsoever to do with ME or to read in every other newspaper article that it has not even been proven to cause any illness at all yet – though I think anyone who gave THAT more than five seconds of intelligent thought might doubt the plausibility of that possibility actually panning out in the fullness of time. It’d be interesting to give the theory to a class of first year high school students and have them work out the mathematical possibility of it actually eventuating, wouldn’t it?

So to the people out there who want to persist with those schools of thought and who share such gems of wisdom with the media on a regular basis, I say to them: shut up and get on with the business of proving it. Give us the indisputable evidence and hurry up about it. I for one don’t have time for anymore of your b******t. In the interim, and until you prove otherwise (and I want it in concrete please), I’m placing all my bets on the WPI’s theory because 1) it’s the most plausible to date; given what we know it stacks up and, 2) because the WPI have something you lack: credibility. They spent their budget wisely and with ME patients’ best interests at heart. You didn’t.

I have no doubt that a relationship between XMRV and ME is going to be established in the fullness of time whether causal or not. My own gut feeling is that it is indeed causal, and I’m going to stick my head out now and say I think that if anyone should know it would be me. You get intimately acquainted with an illness you share your body with for 25 years.

I don’t need to know the opinions of those with nothing to offer but theories. All I need to know at this point in time is what’s wrong with me, and when can I start treatment? The WPI have gone a long, long way to giving me those answers, so please, if you can’t come up with anything useful yourselves, throw in the towel and let them get on with the work they’ve proved themselves to be capable of doing with or without you. It’s in everyone’s best interests. And while you’re at it, how about giving them some kudos for one of the most important scientific discoveries of the 21st century to date? Your silence is deafening on that one.

And of course, the sooner myself and the millions of others like me get treatment the sooner we’ll get up off our beds and get on with our lives and with the business of proving, if there’s any doubt left, that we are neither work-shy nor malingerers. Luckily, we have a ready-made job waiting for us, provided by yourselves, should we choose to take it up. I refer of course to the task of proving years of scientific and medical negligence by the people who were entrusted with the job of uncovering what causes this most devastating of sicknesses. I don’t think it’ll be a big job to be honest because we have most of the evidence we need: medical files spanning a quarter century documenting severe illness and the same number of years of newspaper and journal articles quoting government appointed “experts” telling anyone who would listen that the illness didn’t exist. Ad nauseum you might say. That and, of course, the myriad data held by the WPI and other dedicated scientists over that same not inconsiderable period of time which proves beyond any doubt retro-viral and other infections in people with ME. I can’t speak for anyone else but I for one will be doing my bit to make sure that those who are accountable for the appalling waste of human life and cost to families and society caused by willful misdirection of research (and other crimes against humanity) are given the opportunity to explain why they did it. I think I owe a beautiful young 23-year-old woman who lost everything to a devastating illness that much at least.

Advocacy | Comments (23)

I am a latecomer to CFS advocacy.

When I was diagnosed with CFS (the first time), it was a fluke.  I got the “diagnosis of exclusion” – the one that doctors give you along with a prescription for Xanax.  It was only in subsequent years as my disease unfolded that I began to understand that, even though my diagnosis was bogus, it was accurate.

As I came to understand the politics of CFS, the different empiricals and what they meant, the importance of Hillary Johnson’s “Osler’s Web“, and the extreme mismanagement of the disease by governments across the globe, I realized that I had fallen into the wormhole.  (See The Event Horizon blog).

But I have been extraordinarily blessed as well.  I have come to know and develop friendships with some wonderful people; advocates who have been in the trenches since the Incline Village outbreak affected them personally, advocates who have worked tirelessly against the tidal wave of psychologization in both Great Britain and the U.S., advocates who have been participants in the historical ampligen trials and in the Tahoe Study, and advocates who have been lifelong M.E. activists.

Over the years, CFS advocacy issues have been fought by many – behind the scenes and on the ground at footsoldier level.  Those who have chosen this path have seen things that boggle the mind.  Their work has been hard, and often thankless.  It has at times even met with derision and hearty condemnation by some of the very people who have benefited from their efforts. 

Those who have worked so hard for us have been just as sick as us, and yet have taken on a thankless burden and persevered.

There are so many who have done so much, and to each of you I say Thank You, it has not gone unnoticed.

I would love to name you all, but I won’t, lest I inadvertantly omit someone from the list.  Needless to say, the list is long, and it encompasses people from all walks of life, who have contributed in all sorts of ways. 

Some of you have petitioned government entities.  Some of you have blogged tirelessly, hoping to bring awareness.  Some have testified in Washington, some have run support groups, and some have engaged in active dialog with researchers in hopes of getting their attention.  Some of you have shared your lives out loud for all of us to see and hopefully learn from.  Some of you have worked quietly behind the scenes, one-on-one, trying to help with individual support.

Some of you have watched Bill Reeves with hawk eyes, bringing communications to daylight.  Some have done the same with the CAA, with Wessely, White, and Sharpe, and with any other entity that has allowed psychologization of the disease. 

Some of you have kept history alive, despite all efforts to rewrite it.

Although many years and many lives have been devoted to grass roots advocacy for CFS, we are in as much danger, if not more, than ever.

For newcomers to the world of advocacy, here’s why I say that…

The various empirical definitions of CFS over the years has led us to this point.  We have moved from a small (relatively speaking) population of people with (what Byron Hyde himself said was) M.E., to a huge population with various unexplained fatigue issues…lumped under one massive umbrella.

So in effect, we have a disease that has been hijacked.  The original disease is no longer represented by the government, the medical profession as a whole, or even by the patient population itself.

While there is a real travesty going on in Great Britain, due to Wessely, White, and Sharpe, where people are being sectioned against their will and “treated” to CBT and GET, there is also a ripe and permeated market for programs such as the Lightning Process and Amygdala Retraining, and other mindbody concepts that are meant to deal with CFS as if it were a psychological illness.

Every time the CFS population at large embraces these allostatic-stress-concept treatments as viable treatments for CFS, the portion of the CFS population who have the disease that was originally labeled CFS suffer a setback.  The community itself is telling Wessely, White and Sharpe that they are correct, it really is our bad thinking patterns that keep us sick.

In the meantime, very recent history has aligned our past CDC representative, William Reeves, with Peter White…in a massive and well-orchestrated effort to bring the English treatment model to the United States.  Simultaneously, Michael Sharpe is sitting on the board of our own DSM-5, attempting to recategorize CFS as a somatoform disorder.  And Simon Wessely has been neck-deep in the pseudo XMRV replication studies, supplying patient cohort and consulting, while on the other hand announcing that it does not matter if XMRV is found, as they won’t do anything about it anyway.  Peter White has made the comment that what you find in CFS research depends entirely on what you are looking for.

This is a passionate topic.  People are fighting for their lives.

Anything that gives the allostatic-load concept an edge is something that hurts the process of biological science deeply, given our political climate.  We must understand the politics to understand that the science alone is not enough, since science is being treated as a “social effort”, and the definition of words such as “cured” are being altered to suit the circumstances.

Eventually science will win out.  But it only will as long as the definition of science remains intact.  And that, right now, is where grassroots advocacy is working hard….still on footsoldier levels, and still against the tide.

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My good friend Erik Johnson recently said it better than I ever could, and so I will close this blog with his remarks:

“To put it as short as possible….

“Successful recovery by LP  means that physicians who were treating ME/CFS as a physical illness are actually mistreating their patients…and need to be stopped from what they are doing.

“They were “reinforcing patients’ illness beliefs” in the physical aspect of the illness, when the patients would have been better served in a psychiatrists care, having their Fight Or Flight responses retrained.

“There’s no two ways about it.  If the LP recoveries really do have ME/CFS, and they recover as they say, Wessely is right, Ramsay is wrong, and all the doctors who subscribed to the physical basis of ME were inadvertently violating the Hippocratic Oath by doing harm, and even creating a “false epidemic”.

“If XMRV doesn’t pan out as a compelling concept…and LP does….the implications are enormous. 

“Whatever happens….it won’t be boring.  Wow…heavy, but that’s the way it is.”

Advocacy | Comments (23)