Sunday, February 13, 2011

Civil Rights

Why did I write yesterday's post? Because we are allowing ourselves to be distracted, energies wasted, by small things. We are in a battle for something much larger - basic human rights.

That is what we are REALLY fighting for. The right to be free of the propaganda and censorship that has stood between our illness, and treatment, since 1988.

Our governments - but most energetically, the governments of the United States and the United Kingdom, have deliberately sought to deny us respect, care, and treatment. Why? The insurance lobby. The cost of treating us. Making a name for themselves. Pathetic, pitiful reasons to ruin the lives of so many.

NIH allocates (at most) $4 a person a year - one percent of what NIH spends on Multiple Sclerosis, hardly an overfunded disease. The UK has just issued special research funding - but who will get that funding? Does anyone really doubt where it will go? More "studies" that portray The Disease as the product of "inappropriate illness beliefs". Imitation research, that blames the victims for their own suffering. More censorship of biomedical information, and propaganda dressed up as psychiatry.

The CDC says we are sick because of some vague childhood abuse. They have joined Peter White in "discovering" that a large number of us actually have major psychiatric illnesses. And CDC's website praises the UK's NICE Guidelines, even including a link - those guidelines that condemned so many sick people to going without any medical care at all out of fear of being forced into Cognitive Behavior Therapy and Graded Exercise. Now the UK is changing the rules for those who are too sick to work, who need government assistance. Shirkers all. How long before the US follows suit?

We deserve more. We deserve an honest appraisal of the peer-reviewed research. We deserve doctors, and treatment centers, and real research. Some have been waiting three decades for this. Some have been living their whole lives, stricken as children, imprisoned in this disease - and all government has to offer them is insinuations that they are sick because they were abused, or because they somehow secretly want to be sick. All government has to offer them is the threat of being removed from their homes. They deserve better. Their parents deserve better.

Our countries can do better.

The campaign of constant psychobabble is just that - a campaign. It is designed to portray us as "the other" - as "different." As not deserving of the medical choices a person with MS is entitled to. As not deserving of the medical choices a person who blew out his knee skiing, is entitled to. As not deserving of the choices a chain smoker gets when lung cancer sets in.

That is the recipe for denying human rights: portraying a person as "the other", not "one of us.". Not human, therefore without rights. In Anglo-American parlance, without the rights of free citizens.

But we are human. We are citizens. We deserve our rights as civilians, as members of the larger community. Our civil rights.

We have the right to be treated as human beings, not "weaklings," as Wessely loves to portray us when not in front of scientists.

All we are asking for is the truth. Disagree over it, come up with alternative theses - but start telling the truth.

Our enemies are the people in power who have portrayed us as "undeserving." Who censor the truth and issue propaganda in its place.

That's a big fight, and it's not easy. It calls for strength. We have that strength. It has been honed in the fires of our pain, suffering, confusion, and despair. Our isolation. Our loneliness. Our dashed hopes. And our cares for each other. We have somehow kept on, in spite of all they have thrown at us.

We cannot win this battle unless we stand together against our real enemies. We can squabble like any family does. But we must stop hurting each other. That also means the strength to allow disagreement - as long as disagreement does not turn into harassment.

We have to stand up to CDC. Stand up to NHS. Stand up to NICE. Even if standing up has to be done from a gurney.

Stand up as young people have in Tunesia and Egypt.

But stand together. With one common goal: we refuse to be invisible any more.

I have a quote from Martin Luther King, Jr., from a speech he gave at the end of the march from Selma to Montgomery, Alabama. In four years, his courage in speaking out for his rights would end in his death. He knew that was likely, but he still spoke up.

Keep this in your heart so that you remember what we are really fighting for. We are fighting for our rights as human beings. We are fighting for our freedom from invisibility. And we are fighting for the truth.

King said:

"I know you are asking today, ‘How long will it take?’ ...

“I come to say to you this afternoon, however difficult the moment, however frustrating the hour, it will not be long, because truth crushed to earth will rise again.

"How long? Not long, because no lie can live forever.

"How long? Not long, because you shall reap what you sow.

"How long? Not long, because the arc of the moral universe is long, but it bends toward justice."

Not long. We will not be invisible forever.

Saturday, February 12, 2011

Unity, disagreement, and respect

There has been a lot of talk about unity lately. I'm not sure unity is what we need. What we need is to understand we are all in this together. What we need is to treat each other with respect.

There is nothing wrong with criticizing research. Researchers do it all the time. Just keep it professional - that means, criticize the research choice or the evidence or the model or the conclusions. Offer alternatives that might have been included. Conversely, as a researcher I know all too well that your research sometimes feels like your baby. But no one should take offense at a desire to discuss the nature, or quality, or results of the research.

Personal attacks are different. Again, you can criticize what someone says, in a constructive discussion. To do so, you have to be willing to accept disagreement. Without demonizing the person you disagree with.

So that is what it comes down to. Allow disagreement, but keep disagreement civil. Show respect for each other.

There are a lot of raw feelings out there right now. For the first time in 25 years, patients have hope. Hope is a wonderful thing, but it is also scary. With so much at stake - the tyranny of the psychobabblers v. recognition that we have a real disease, which would mean treatment, which would mean freedom - it is no wonder that many are on edge.

I know all too well what it means, because on Ampligen I am a real person (who has problems with stamina and shaking off illnesses). I am no longer in a cloudy fog, in pain and confusion 24/7. I can walk, can drive a car, read a book, write. Visit my grown children and grandchildren. Go places with my husband. Walk barefoot on a beach.

And I know the fear. I have lost Ampligen, an immune modulator that has worked for me since 1999, and spent seven months in 2008 terrified of the inevitable crash when my immune system folded and I would be attacked by multiple viruses. Knowing that at some point within a year, the anvil over my head would fall. And it did, in September 2008.

But at least I have an excellent specialist, Dan Peterson. I have had access to testing and treatment that cost much more than most of my friends have to live on. I have been very, very lucky. I have been back on Ampligen for almost a year and am much better. But it has come, for me, at a terrible price. I have to live in Tahoe (that part is okay!), while my husband of 36 years remains 2500 miles away, at home. I get to see him about once a month. I miss him dreadfully. But there is no choice.

Since collapsing in my office on October 24, 1994, I have known hope, I have known hopelessness, and I have known fear. I have known despair, but also peace. However, thanks to sound biomedical research and treatment, I have also known the excitement of being able to walk outside without a cane. I have danced at my son's wedding, and held both grandchildren on the dates of their birth. I had thought none of that would be possible again.

I understand all the emotions of having a disease that is not supposed to exist. I know why we strike out in frustration and anger, and sometimes confusion.

But we cannot go after each other - we can disagree, but we should not get angry because one of ours disagrees with us. We should not go after individuals like a pack of wolves. I've seen that, too, lately - and though I know it comes from the hope and the fear, it is still wrong.

So I am going to ask for something that would sound strange to an outsider, but we know better.

This is the time to be strong. Yes, strong. Strong in character. We know it takes strength to live with this disease. I know you have it. Now is the time for strength.

Resist the impulse to panic at the sign of a setback. Assume the best of those in our community. Allow competition and disagreement.

We must be strong and united in our quest for the truth.

Because that is what we are fighting for - the truth. We are in a battle for the most basic of human rights - understanding, treatment, and care. Our foes are those who have portrayed us as less than human, undeserving of attention. Their tools are censorship and propaganda.

We must stand together. We can disagree among ourselves - indeed, we must - but no one should be attacked for disagreeing, and in disagreeing, never personally attack one of our own.

We must be above petty infighting.

Because we are in a battle for our fundamental civil rights. God willing, we will succeed.

Friday, February 11, 2011

CDC Research on CFS: Open Deception

This post contains evidence of deliberate deception by the CDC - in refereed journal articles and when speaking to the press.

I'm tired of sending this information to the CFSAC, to politicians, to reporters,and to scientists. Nothing ever happens. Maybe one of you reading this can find a way to do something about it.

Bill Reeves' name is on all of it - but he is not the only one, and I ask every co-author, every collaborator, to disavow this research, and the resulting questionnaires.

In the following documents, CDC describes a two-day hospital stay in Wichita. According to the CDC, there was only one such two-day hospital stay having to do with CFS.

We are told there were 227 patients with CFS, 58 patients with CFS, 43 patients with CFS, and 6 patients with CFS - same hospital stay, same group of patients. What happened here?

We are owed a public apology and a retraction, and we should not rest until we get one.

This is important, not because it was Reeves, but because the CDC still uses a set of diagnostic questionnaires that Reeves claimed "operationalize the Fukuda definition" - but the only formal effort to verify that claim was in this two-day Wichita hospital stay.

This must be aired publicly, because it is just plain wrong. There remains an article claiming to disprove NMH's relationship to CFS, the questionnaires continue to be used by CDC to diagnose "CFS", and co-authors continue to be decision-makers regarding our disease.

Here goes:

1. In April 2006 there was a conference call and press release about the genome study, where Reeves stated 227 patients with CFS from a population study brought into a hospital for two days were included in the data set - and also stated there was only one such study, so it's the same as in items 2, 3, and 4 -

You have to scroll down past Dr. Gerberding's long introduction to get to Dr. Reeves, and it's about ten paragraphs into his presentation to the reporters.

Just in case it looks like Reeves misspoke, there was also a written press release, also currently inaccessible (though it looks like there's a link) - but again, that's why we love caches and Google - in this one he says 227 patients with CFS in the second paragraph.

Why was this open deception okay? Where's the apology?

2. In December 2005, BioMed Central published an article describing the 2-day Wichit hospital stay, in which it was stated that 227 people from the Wichita surveillance study were brought into the hospital for a two-day stay: 58 who had been diagnosed with CFS during the study, and 169 people from 3 other categories: (1) "insufficient Symptoms of Fatigue" (ISF) to be classified using the Fukuda definition; (2) CFS and ISF with major melancholic depression, which was exclusionary; and (3) a set of matched controls.

So of the 227 people who were brought into the hospital, only 58 had been diagnosed with CFS. And of these 58, only 6 remained after various exclusionary criteria were applied.

To repeat, only six of those remaining in the study had been diagnosed with CFS using the methods of the surveillance study (telephone interview with physician follow-up, using the Fukuda criteria).

The origional article can be found here:

The information is mainly in the tables; if you are reading it online, click on table 2 and table 5.

3. The same article found 43 patients currently afflicted with CFS using the new questionnaires - including only those 6 patients who had been previously diagnosed with CFS during the surveillance study, plus another 4 who were newly diagnosed from the ISF group, plus 6 who would previously have been excluded for major melancholic depression for a total of 16 claimed to meet both the surveillance criteria and the new questionnaires -

Note: this is the only published trial performed by CDC to substantiate their claims that the questionnaires "operationalize" the Fukuda definition:

4. The depression exclusion was changed after a meeting of the so-called "CFS International Working Group" - but - the new criteria only said you could add in patients with major melancholic depression if and only if the bout of depression had resolved and not returned for at least five years before the onset of fatigue. You will not find the 5-year requirement in the abstract of the International Working Group's article on CDC's website - you have to pull up the article in BioMed Central:

"The 1994 case definition stated that any past or current diagnosis of major depressive disorder with psychotic or melancholic features, anorexia nervosa, or bulimia permanently excluded a subject from the classification of CFS. Because these illnesses may resolve with little or no likelihood of recurrence and only active disease or diseases requiring prophylactic medication would contribute to confusion with evaluation of CFS symptoms, we now recommend that if these conditions have been resolved for more than 5 years before the onset of the current chronically fatiguing illness [my emphasis] they should not be considered exclusionary.

And, finally,

5. The two-day hospital stay data was used in an article claiming to have disproved any connection between NMH and CFS (as described in a 1995 JAMA article by Johns Hopkins researchers)> The Reeves article states that 58 patients with CFS were brought into the hospital for a two-day stay and were given tilt table tests, and did not have NMH/POTS.


But we know that only 6 of the 58 supposedly still had CFS by the time they entered the hospital for that two-day study. Even if they had turned to the questionnaires to put together the sample, it was only 43. So where were the supposed 58 patients with CFS in a two-day hospital stay?

How many patients with CFS (Fukuda) participated in the two-day Wichita hospital stay?

6? 10? 16? 43? 58? 227?

Reeves (as representative of CDC) openly lied:

1. To the press corps (and probably the researchers in the genome study) when he said there were 227 patients with CFS in the two-day Wichita hospital study.

2. About the depression exclusion as defined by the Inernational Working Group on CFS - when he omitted the requirement that five years pass after the last incidence of depression and the beginning of current symptoms of fatigue.

3. About how many patients in the two-day hospital stay could be diagnosed with CFS - using the old or the new method - in an important refereed journal article used to "disprove" a theory about ANS dysfunction among CFS patients - when he said there were 58 patients with CFS who stayed in the hospital for two days;

4. And about having validated the questionnaires still used by CDC to diagnose CFS. Reeves has claimed that they "operationalize" the Fukuda definition. But his own published research show the questionnaires do not diagnose CFS (Fukuda) at all. He has quietly - and effectively - created a brand new definition, with far more in common with the Oxford definition used by British psychiatrists than the Fukuda definition he was supposed to use as director of the CFS program at CDC.

Ultimately, it is the questionnaires that perpetuate the biggest lie of all. If the CDC truly believes the Fukuda definition, amended by the Inernational Study Group, is the correct one, the questionnaires must be jettisoned now, and the Georgia data set re-examined, if not also discarded entirely.

All of us are owed a formal retraction and repudiation of the publications resulting from the two-day Wichita hospital stay.

The U.S. has allocated so little to the study of CFS, a disease that we know impacts a million Americans. How tragic that the money was wasted, apparently to promote an individual agenda.

I tried for four years to do something about this, and I failed.

I am now handing it to the community - and the co-authors, who share responsibility even if they worked on a different task in the study - to get something done.

Public apology and public retraction - nothing less.

Mary M. Schweitzer, Ph.D., Delaware, USA

Tuesday, February 1, 2011

Institutionalized Abuse and the Treatment of Patients with M.E. and CFS

Recently, as I read back through the psychiatric studies used to back the therapies of CBT and GET, I found myself thinking about the steps that an abusive spouse or parent takes to perpetrate the crime. People often ask victims of abuse, "Why didn't you report this the first time it happened?" The victim generally has no good answer, because he or she has been the unwitting subject of a psychological campaign by the abuser to prevent any disclosure of what is going on.

The British have been the worst abusers for years, in part because British psychiatry already has categories that fit a definition of CFS. In particular, the British have used "neurasthenia," harking back to an 1869 textbook that coined the term. The textbook is fascinating - the author makes the claim that girls who study science in high school risk either "neurasthenia" (a chronic nervous condition; the vapors; nervous breakdowns) or "hysteria" (defined here as a shrunken womb) because the body cannot develop both the mind and the reproductive organs at the same time.

How this ended up being accepted as a reputable source is beyond me, but then reviewers seldom actually look at the footnotes in a scientific journal - particularly footnotes that fall in the category of "survey of the literature." I believe that Simon Wessely and Stephen Straus, who both referenced Beard's "American Nervousness," slipped one past the profession there.

Neither neurasthenia nor hysteria are in the American Psychiatry Association's bible of diagnoses, DSM-IV. Thus far, adult Americans have been spared the worst abuses that have faced patients with M.E. or CFS in the UK.

However, a new category is being prepared for DSM-5. It is called Complex Somatic Symptom Disorder, or CSSD. The description reads just like the CDC's Fukuda (1994) definition for CFS, plus they've added in a pain version for fibromyalgia patients. So we all need to pay attention to what happens when psychiatrists believe that "CFS" symptoms are the physical manifestation of a psychological problem. The result is a classic abuse pattern.

Here are the main means by which abusers are able to continue their cruelty for years.

1. Isolate the victim
2. Tell the victim nobody will believe his/her story.
3. Threaten the victim with harm if he/she tries to tell the story anyway.

1. Isolate the Victim

This is accomplished by a diagnosis that leaves the worst patients bereft of medical care and isolated at home. People in the "real world" do not see the worst cases. They do not see them when they come in to clinics - because they don't come in to clinics. They do not see them at the grocery store or outside because by leaving them untreated, they have rendered the worst victims unable to participate in any way in the outside world. And by laughing at our disease, they keep the walking wounded invisible too, because no one wants to confess to HAVING this disease. So the victim has been isolated. In the places where M.E. was a valid diagnosis, the abusive relatioship first required the premise that M.E.= CFS (it does not), followed by the premise that CFS = "maladaptive coping mechanisms to illness" or "inappropriate desire to play the sick role."

2. Tell the victim that nobody will believe his/her story

Now, this has a twist. The recommendations of the Wessely-White-Sharpe-Chalder-Deary school of professional abuse don't have to tell the victim he/she won't be believed - we already know that. The twist in this case is in the information they are giving health care providers. They say not to believe what we tell them. The concept of "false illness beliefs" is heavily emphasized in all of the literature, including the CFS website of King's College London. They recommend that the medical profesional offer sympathy and pretend to believe what the patient is saying, but they warn not to get drawn in. Doctors who do believe what the patient is saying are themselves isolated by being charged with supporting abnormal "illness behaviors."

The CDC's version of this was to say - There were no cluster outbreaks. There were just outbreaks of diagnosis. Patients would go from doctor to doctor, seeking a diagnosis to confirm the patient's own beliefs about his/her illness. it is, of course, an insult to the doctors who helped patients in the cluster outbreaks as well as an insult to patients - but the argument succeeded. Few people know about the cluster outbreaks of the 1980s, and nobody knows about those that have happened since. You will find evidence of this in Hillary Johnson's masterpiece, Osler's Web, and I was present to hear Dr. Reeves use this argument to explain away the "theory" of cluster outbreaks at the CFSAC.

3. Threaten the victim with harm if he/she tries to tell the story anyway.

This is the scariest one of the three - scary because we are not talking here about an individual, but about a society, about a government entity. About the very people who are supposed to help you (doctors). What is the threat? In the UK it's very clear: You will be sectioned. You will be sent to a psychiatric hospital. The threat can be the withdrawal of any medical care at all. That is, if you persist in peppering me with information about CFS, I will no longer be your doctor - so where will you go when you need medical treatment for something else? I'll treat you - but don't bring up that silly disease fantasy.

Sophia Mirza needed care, but no doctor would agree to her simple request that she just see somebody without the threat of being sent into a psychiatric hospital. Sophia had been mistreated badly in a mental hospital and did not want to go back. No doctor would promise not to send her back to the psychiatric hospital, so she saw no doctors. She had been threatened into isolation. Abuse by the medical profession that killed her.

The threat is greater in both nations when applied to young people who become severely ill with M.E., because it is the young who are the most vulnerable. The threat is that they will be taken from their parents, because their parents have gone to a lot of trouble to seek a diagnosis and find a way to make their child more comfortable - perhaps even find a cure.

This should be perceived as admirable behavior, but the diagnosis of "factitious illness" and "factitious illness by proxy" represent cruel violations of the normal doctor-patient relatioship. In the U.S., the threat of "coming out" - of trying to get treatment and accomodations for your child - is that your child will be sent off to the foster care system and never returned. The threat is to have happen to you what happened to the Baldwin family in North Carlina, whose son Ryan was removed from his parents' home apparently because his parents were successful in finding a diagnosis that could help relieve some of his discomfort, successful in getting him a wheelchair to help him be more independent, and successful in being accepted for disability payments in his behalf with which to make his life more comfortable, and fund his medical care.

In the rare instance that a parent might actually be deliberately making the child sick to get attention, it wouldn't be a fancy neurosis called "factitious illness by proxy." We would be dealing with a sadistic sociopath! Clearly this theory hasn't been thought out completely - but is that because once thought out, institutions would lose this threat over parents? Once a psychiatrist confirmed that parent was not a sadistic sociopath, that would be the end of it. Thus, the Institution created a category that they can control.

In England, the threat is to be "sectioned" - to be sent to a mental hospital. And in both nations, this threat is very, very real. So this is the final threat:

If you come out about what you have, we will make your life miserable. We may even kill you.

So says the abuser.

So say the advocates of the British psychiatric school of "CFS treatment."

So say the marketing wizards behind cognitive behavior therapy and graded exercise therapy.

So say those working in secret to create the category of Complex Somatic Symptom Disorder (CSSD) for the APA's new DSM-5.

What does history tell us about abuse? The victim needs help from the rest of society.

God willing, things will change.

Mary M. Schweitzer, Ph.D.

Note: For a fascinating read on how British psychiatrists believe patients with CFS should be treated, go to the website on CFS for professionals by King's College, London. For a new essay on the nightmare this has caused patients there, read The Mental Health Movement: Persecution of Patients? by Malcolm Hooper.