CFIDS Watch

Doug coil machine resources

2012-02-06T09:31:00.000-08:00

Warning! See a doctor before subjecting yourself to electromagnetic fields*!

(*Excluding, of course, the perfectly safe EMF from your house wiring, your cell phone, your television, your computer, your car's engine, florescent bulbs, WiFi hotspots, cell towers, radio and TV stations, military radar, high tension lines, and other approved and highly profitable sources of EMF.)

As it says in my disclaimer, I'm not a doctor. I'm only sharing my personal experiences. In case someone might be crazy enough to try experimenting with a Doug coil machine or other type of Rife machine like I've done, I've created a list of some resources I found interesting.

Before an ordinary person, lunatic or otherwise, were to build or buy a coil machine, or experiment with any type of Rife machine, it would seem prudent to do some research. I started with Bryan Rosner's excellent book, Lime Disease and Rife Machines.

When I was wondering what exactly a Doug coil machine is, I found What's a coil machine? to be quite helpful. This is part of a fascinating and meticulously maintained blog by a woman who has been experimenting with a Doug coil machine since January 2011. I also like her unscientific explanation of how a coil machine might kill pathogens. The video of the collapse of the Tacoma Narrows bridge is particularly graphic. Don't let young children or pets watch it without supervision.

I also loved Bryan Rosner's interview with Doug MacLean, inventor of the Doug coil machine. His story is quite inspiring.

Last but not least, I experienced a sharp stab of malicious joy while watching some spirochetes being stunned into stillness by the EMF generated by a Doug coil machine. If you are reckless enough to watch this video, keep an eye on the corkscrew-shaped microbes. Poor little things.

Doug coil machine manufacturers

John Stolar. John builds these machines, and his Free Stuff page tells you how you can build your own. See also his old site. John is currently unavailable but will reportedly be back in April 2012. If you want to try to reach him, here's his email: coilmachines4less@gmail.com
Doug Freeman. I had some trouble with my machine, and my supplier was unavailable. I emailed Doug Freeman, who was very helpful. (I've since resolved the problem, which turned out to be a bad audio amplfier. The vendor, Abe's of Maine, replaced it.)
Roger Simon is a new builder who is currently selling the capacitor box and coil for $950, same as I paid for mine.
Alex Levy.

My machine's total cost was about $1700. That included $950 for the coil and the capacitor array cabinet, which were built by hand by my supplier, plus two off the shelf items, a QSC 1850HD audio amplifier ($520) and an Instek SFG 2004 signal generator ($230) which I bought from retail sources recommended by him. He was able to get me discounted prices and free shipping on those components, which saved me over $100 in total.

Lyme disease and Rife machine information resources

The Consolidated Annotated Frequency List. This is a list of EMF frequencies that can be used to experiment on various pathogens using a Rife machine.
Neenah Sylver publishes another directory of EMF frequencies.
Rife Machine User Reports
Lymebook Resources
Lymnet Flash (The Lyme Disease Network)
DFE Research
Bioelectrics For Health manufactures a plasma-type Rife machine. There are many other such manufacturers of plasma-type Rife machines, and their effectiveness is said to vary considerably. Proceed with caution.

Lyme disease and Rife machine forums

Rife and Doug coil machine background

Rife.org
Doug MacLean's letter to Bryan Rosner
The Cancer Cure that Worked. This is an excerpt from the book by Barry Lynes about Roy Rife's experiments in the 1930's, and subsequent events.

Cautions

I have read that the FDA considers Rife machines to be dangerous. I agree that they can be. I have been very careful in experimenting with my Doug coil machine, and also with a plasma-type Rife machine.

The way I see it, in some ways a coil machine is analogous to a car. Used properly, a car is a very useful device. It can get us from one point to another very quickly compared to walking or riding a horse. But used improperly, a car- a device weighing a ton or more, capable of traveling at speeds far above that attainable by an unassisted human - can maim or kill.

A Doug coil machine is much the same. The limited and mostly unscientific research available suggests that Doug coil and plasma-type Rife machines can destroy spirochetes and other pathogens in vitro, and many experimenters report improvement in their symptoms after experimenting on themselves in vivo.

But a Doug coil machine contains large capacitors that store a significant amount of energy even after the machine has been turned off. Opening the capacitor cabinet and touching the conductors can result in severe electric shock.

A Doug coil machine also generates a strong electromagnetic field. If this EMF does indeed kill pathogens, then their bodies can release toxins, producing a Jarish-Herxheimer ("herx") reaction much like that produced by an antibiotic. Too much toxins released too quickly could stress the body's ability to process and excrete these toxins. Killing an overabundance pathogens would not be a good thing if the tradeoff was damage to the liver.

I have been careful to always start with 15 seconds when I begin a new frequency. Even that has been followed by significant herxing. After the herx has passed, I experiment again, increasing by increments of 15 seconds, noting the severity and duration of the herxing, until I've reached my goal of 5 minutes on my abdomen and 2 minutes on each of 14 other points around my body on that particular frequency.

If at any point the herxing is really bad, I don't increase the duration, but instead use the same duration for subsequent experiments until the herxing diminishes, and then try increasing by 15 seconds again.

There are EMF frequencies which are said to be potentially harmful to humans. I am careful to avoid these frequencies, which include 1840 and 1910 Hz.

Also, I take glucomannan capsules. Glucomannan is an herb which is generally sold as a diet aid because it expands in the gut and makes you feel full. But it is also said to be very effective at binding toxins and helping the body excrete them. Others have used Welchol for the same purpose, but I have found glucomannan to work well for me, and it's much cheaper, as well as being nonprescription.

So far I'm not dead yet, so I guess my approach has worked all right.

Disclaimer

I am not a doctor or a health care practitioner. This blog describes my own personal experiences and opinions. It is presented for informational and educational purposes only. It is not intended to prevent, diagnose, treat, or cure disease. The statements on this blog have not been evaluated by the FDA.

Disclaimer No. 2

I am not a professional humorist. The statements on this blog have not been evaluated by Groucho Marx, Bugs Bunny, or David Sedaris. The whacky statements on this blog may be less whacky than they appear. Or they might be more whacky.

A New Direction: Coiling for Lyme

2012-02-06T07:22:00.000-08:00

Departing the loving arms of the drug-and-cut paradigm and going over to the Dark ... er, Lunatic Fringe Side.

By now you have probably heard about the collapse of XMRV research by Judy Mikovits and the Whittemore Peterson Institute. If you haven't, details of the whole sordid story are available at X Rx Blog and Phoenix Rising, among many other sources.

The news of this disaster came at a very bad time for me. In the fall of 2009, samples of my blood submitted to IgeneX came back positive for Lyme disease and Bartonella. I opted to try an acupuncture and herbal treatment regime with Tim Scott.

Through the winter of '09-10, I had some improvement, but was still far from well. In the spring, after stopping the treatments, I had a short period of feeling much better, but then I deteriorated dramatically. My symptoms escalated, and a new symptom, severe dizziness, emerged.

By late summer 2010 I was no longer able to even do my own grocery shopping. The very limited social activities I'd been able to engage in (mainly occasional lunches with friends) came to an end. As you can imagine, these new developments were very discouraging. I had always believed on some level that I would get well, that somehow or other I would find a way to recover. This new major progression of the illness destroyed that belief.

Over the following winter my capabilities declined further. At the same time, the bad news about Judy Mikovits and the WPI began to emerge. I'd clung to the hope that as a result of their research some sort of effective treatment would eventually become available to me. By the spring of 2011, that hope was gone.

For seventeen years I had been fighting a disease that had taken everything that mattered to me except my family. My job, my career, my friends, my home, all my possessions, the ability to fly, the ability to race cars, the wonderful airplane I had built myself, the marvelous car that my brother and I had built together, the tools and workshop that had made these possible. With few exceptions, everything was gone, and the things that weren't gone were in storage, too toxic to me for me to even go near them.

Now hope was gone too. I had to acknowledge that the battle was over. After almost two decades of struggle, of hopes being dashed again and again, I had no more fight left in me.

I began the process of letting go, of acceptance. After the onset of MCS in 2004 I'd had to accept that I was never going to return to my old life. In 2011 I began to try to come to terms with the fact that I was never going to get well, that for the rest of my life I was going to be as sick as I was then, and that I would probably continue to get sicker until I was no longer able to take care of myself. At that point it would be time to take the decision to leave the planet.

Then a friend intervened. My good friend Sue, who had had her career as a home renovator and carpenter cut short by a very similar illness a few years before, called me. She had bought a device called a Doug coil machine, and she was experimenting with it. Like me, she had tested positive for Lyme and Bartonella, and she believed that this machine would help her destroy these pathogens and recover.

After all the things I'd tried that hadn't helped, I was very skeptical. Over the years tens of thousands of my money had gone down the drain as I looked for something that would help me get better. Spending almost two thousand dollars on a device that sounded like something from the lunatic fringe didn't appeal to me. Besides, I was into my process of letting go. Trying something new would interrupt my journey to acceptance.

But Sue didn't give up. She kept calling and emailing, urging me to get a machine like hers. I poked around on the internet, learning about the theory behind the Doug coil machine and the history of Roy Rife, whose research in the 1930's laid the foundation for Doug MacLean's invention of the coil machine fifty years later.

Finally, in late July of 2011, after hearing Sue's cautious description of improvement in her symptoms, I called John, the man who'd built Sue's coil machine, and ordered one for myself. I also ordered a copy of Bryan Rosner's book, Lyme Disease and Rife Machines.

I was still really skeptical, and still working on my process of acceptance. Rosner's book sat by my bed for weeks, unopened. Meanwhile, John - who told me that at one time he had been very sick - went hiking in the mountains. It was well into the autumn before the last of the components of my machine arrived.

On October 21 I began my own experiments. I found that within a few hours to a day or so after I coiled, I got an escalation of symptoms which I believe to be a Jarsich-Herxheimer reaction - a "herx" - which is said to be the release of toxins from the dying microorganisms. After the herx wore off, usually within 24 to 48 hours, I felt better.

At first, when I was only coiling for Bartonella, the fluctuation in symptoms after a coiling session was moderate. Since my symptoms have always varied, I wasn't totally sure that these "herxes" were actually due to the machine. Still, I was sometimes able to do my own grocery shopping, which was encouraging.

In late December I got much sicker. In early January 2012 I developed new symptoms, including stomach distress, nausea, and diarrhea. I don't know why, but I understand that the symptoms from herxing can vary a lot over time, so it seems possible that these new symptoms were caused by the die-off of Bartonella bacteria.

In mid January, after my stomach had improved somewhat, I tried coiling for Lyme. The herxing went through the roof. I had headaches more brutal than I can remember from any time since the initial onset of my illness in 1994. I had never been so dizzy. But after a few days, when the symptoms died down, I had a day or two that were better than any I'd had in recent memory.

This has happened three times in succession. There is no longer any doubt in my mind that the coil machine is having an effect.

Not quite four months in, I'm still in the early stages. Popular opinion seems to be that it can take from one to three years to kill all of the Lyme and coinfection pathogens in the body. I know I have a long way to go. And I don't know if I will ever get well.

But I have hope again. I'm not working on that damn process of acceptance any more. To hell with acceptance.

The fighter is back.

DISCLAIMER

I am not a doctor or a health care practitioner. This blog describes my own personal experiences and opinions. It is presented for informational and educational purposes only. It is not intended to prevent, diagnose, treat, or cure disease. The statements on this blog have not been evaluated by the FDA.

Failed XMRV "Replication" Studies

2011-06-13T07:18:00.000-07:00

Several studies have been published in recent months in which scientists were unable to find XMRV in patients diagnosed with ME/CFS. Authors of these studies and others have claimed that these results discredit the seminal XMRV study by Lombardi/Mikovits of the Whittemore Peterson Institute and contend that Mikovits' results must have been due to laboratory contamination.

As a result of these studies, Science magazine published an Editorial Expression of Concern, which casts doubt on the Lombardi/Mikovits XMRV study which Science themselves published in October 2009. Here are responses from the WPI:

Dr. Judy Mikovits
Annette Whittemore
WPI Clinical Advisory Board

Below is a comparison of the parameters, tests, and methodologies used in the failed studies, the Lombardi/Mikovits study and the Alter/Lo study, which found an association between ME/CFS and MLV's (Murine Leukemia Viruses).

A Comparison of Methods for the Detection and Association of XMRV in Chronic Fatigue Syndrome

None of the failed studies came anywhere close to replicating the work of Lombardi/Mikovits and Alter/Lo. Saying these studies disprove anything is like saying that just because my paper airplane can't fly across the street, humans can't possibly have made it into space.

Bogus "research" and careless, sloppy reporting like this does no one any good.

Thanks to Dr. Jamie Deckoff-Jones for posting this comparison. Her blog post has the individual pages of this comparison in case you don't have a PDF reader.

True replication works

To put the failed XMRV studies into perspective, Dr. Deckoff-Jones reports on an incident in which a group in Munich failed to find XMRV. (Search the page for Munich.)

This group then contacted Dr. Mikovits and worked with her on their next attempt, and lo and behold, they found XMRV!

Antiretrovirals are working

Incidentally, Dr. Deckoff, who was disabled by ME/CFS for many years, has returned to work and is now practicing medicine in Hawaii. She and her daughter Ali tested positive for XMRV and have been using antiretrovirals, including raltegravir, tenofovir, and AZT, for eighteen months. Although Ali has seen some improvement, she is still quite ill.

On the other hand, Dr. Deckoff's response to the antiretrovirals has been remarkable. See her blog post:

Once more unto the breach, dear friends

XMRV/ME/CFS and Inflammation

2011-06-13T06:48:00.000-07:00

Two studies regarding inflammation in people with ME/CFS have been published recently.

The Whittemere Peterson Institute published Xenotropic Murine Leukemia Virus-related Virus-associated Chronic Fatigue Syndrome Reveals a Distinct Inflammatory Signature, which reveals a distinct cytokine and chemokine signature in people with XMRV-associated CFS and suggests a possible diagnostic procedure for the disease. (Thanks to Dr. Jamie Deckoff-Jones for publishing a link to this study in her blog.)

Also, a study, Exercise Challenge Reveals Potential CFS Biomarkers, explores biological responses to mild exercise in people with CFS. This study, by a University of Utah group affiliated with the CFIDS Association of America, supports the personal observations of many of us with ME/CFS who find that even very mild exertion can cause a significant relapse and/or severe exacerbation of symptoms.

The study also found that the use of anticonvulsants can have a beneficial effect, reducing this post-exertional relapse.

Dr. Deckoff and the new WPI clinic

2011-02-25T06:59:00.000-08:00

Dr. Jamie Deckoff-Jones is now working for the Whittemore Peterson Institute, hiring staff for their new clinic, which will be treating neuro-immune diseases, including CFS/ME, Lyme, and autism - and feeding what they learn back to the WPI's research center.

The institute also plans internet discussions and face-to-face conferences with practitioners all over the world. This connection between research and a large and well-coordinated body of clinical experience has been missing in the world of neuro-immune disorders, and, as Dr. Deckoff explains, could lead to crucial breakthoughs in understanding and treating these diseases.

Cort Johnson of Phoenix Rising interviews Dr. Deckoff here:

The Patient Side: WPI Clinical Director Dr. Deckoff-Jones Talks

The fact that the WPI plans to treat Lyme patients supports my belief that Lyme disease, like CFS/ME, is actually caused by XMRV or a related retrovirus, which impairs the immune system in such a way that Lyme and/or other tick-borne pathogens as well as herpes viruses such as Epstein-Barr (mono), CMV, and HHV-6 can thrive. This seems to be the operating theory at WPI as well.

The WPI is at the forefront of research on these illnesses. While much of the medical community and the government-run and -funded research bodies have their heads in the sand, the people at WPI are fired up and working hard to understand the underlying causes and mechanisms of these diseases and find effective treatments.

Right now, these people are my best and only hope for one day being able to have a life again.

The Human Cost

2011-01-10T08:57:00.000-08:00

Millions of people suffer from the ghastly disease known as "Chronic Fatigue Syndrome." Some can still function, with limitations, but for others life has been reduced to a dreary, pain-filled hell unimaginable to those who are not touched by the disease.

One woman has to be taken to the bathroom in a wheelchair. Another, having developed a brutal sensitivity to light, must navigate her home by touch, lights out, windows sealed against the faintest ray from the sun. Yet another spent the best part of a year living on her bathroom floor, unable to crawl back to her bed.

While the government agencies who are supposed to be helping these people continue to dance away from their responsibilities, thousands live with equally devastating horrors. Some are homebound, others bedbound; some are unable to read, others unable to speak; many require round the clock care. Yet these people - isolated, in agony, lives in ruins - still cling to hope.

For the most part, because they are too ill to participate in life in any meaningful way, these people are invisible.

Here are some of their stories.

The Exit Project - Wheelchairs are the good news.
The Corner Room - Life in the dark.
Peggy Munson - Author of Pathogenesis and Stricken.

Dear friends - Life on the bathroom floor.
Who is that Bubble Girl?
Fly Away to XAND-ado, or Where Is Elaine DeFreitas?

Mary Schweitzer - A tenured professor at Villanova University.

My Story
Slightly Alive - Testimony to the Chronic Fatigue Syndrome Advisory Committee of the
Department of Health and Human Services.
Essays - Essays, experiences, and more testimony.

Lauren Hillenbrand - Author of Seabiscuit and Unbroken.
- A Sudden Illness
- Washington Post - In the final paragraphs of Page 3, Lauren speaks for me.
- Newsweek
- USA Today
Michelle Akers - World-class soccer player.
Sophia Mirza - Unable to tolerate light, sound, food, or water, Sophia died after being "sectioned" into a mental hospital by the British National Health Service, who claimed she was mentally ill. Autopsy showed “unequivocal inflammatory changes affecting the ... dorsal root ganglia ... The changes of dorsal root ganglionitis seen in 75% of Sophia‘s spinal cord were very similar to that seen during active infection by herpes viruses (such as shingles).”

These horrifying stories make me grateful that - although I can no longer work, socialize, or even shop for my own groceries - I am still able to make my own meals, get myself to the bathroom, and occasionally get out to go to a medical appointment.

But these stories also frighten me, because they foretell what is likely in store for me if effective treatments are not found soon.

XMRV treatment in 2011?

2011-01-08T09:27:00.001-08:00

In an interview with Nevada Newsmakers on December 22, 2010, Dr. Judy Mikovits says that "This is really a great time of hope ... we are understanding why the virus hurts the immune system ... what's going wrong to make you sick. ... We expect treatments next year."

This is right at the end of the video, starting at about 12:15.

Update: In December, at the International Science Symposium on ME/CFS in Queensland, Austrailia, findings of brain and spinal cord damage and immune system derangement dominated the reports. Promising research into viral infection and exercise intolerance was also discussed.

Jamie Deckoff-Jones on contamination, autism, and an epidemiological disaster

2011-01-08T08:44:00.000-08:00

Jamie Deckoff-Jones, MD, is a physician who is XMRV positive and suffers from ME/CFS. She maintains a blog about the disease and her own progress with HIV retroviral treatments.

In her post on December 22, 2010, Returning to Function, Dr. Deckoff responds to the papers released two days earlier showing that mouse DNA contamination can distort PCR test results - and the ludicrous claim that this proves XMRV does not cause CFS. She also discusses a possible relationship between XMRV and autism.

Later in her post, Dr. Deckoff touches on the epidemiological investigative and research disaster that has led to the spread of what now appears to be a very dangerous virus. Had proper investigation and research been done when "Chronic Fatigue Syndrome" epidemics surfaced in Incline Village, Nevada, and Lyndonville, New York, over 25 years ago, this ghastly disease might have been confined to a relatively small number of people.

Instead, millions are infected, millions are suffering, millions have had their lives destroyed. Who knows how many thousands have died? How many more will be infected before the mechanisms of transmission are understood - and methods of prevention devised?

Dr. Deckoff's blog post is the source of the new quote in this blog's header, above. Thank you, Jamie, for your eloquence, your passion, and your commitment to science and truth.

Update: Contamination In the News

More on the PCR/mouse DNA contamination red herring:

Whittemore-Peterson Institute Statement Regarding Retrovirology Article
XMRV: A Human Retrovirus with Unknown Pathogenic Potential, Not a Lab Contaminant
The Wall Street Journal
The New York Times
Letter from Annette Whittemore
XMRV and CFS - It's not the end - a well-known virologist retracts his initial knee-jerk reaction.

Macaque monkeys and XMRV

2011-01-06T11:35:00.000-08:00

Possibly the most significant CFS-related research published last year was done by a group connected with Emory University, Abbot Labs, and the Cleveland Clinic.

Rhesus macaque monkeys were injected with XMRV, and then their blood and organs were tested to track the progression of the infection.

After a few weeks, XMRV was almost totally gone from the blood. But the infection had spread to many of the organs, including the lungs, spleen, liver, lymphatic system, bronchial passages, gut, and the sex organs.

When the monkeys were later injected with a bolus of foreign peptides (which mimics an acute infection, an immunization, or an acute mold exposure) there was a huge reactivation of infectious XMRV. Stress and certain hormones also appear to be significant reactivators.

This study is quite consistent with my observations of the behavior of my own illness over the past 16 years. It also sheds new light on several recent studies which failed to find XMRV in the blood of patients with XRMV.

I believe this study should provide new impetus and direction for future XMRV and CFS-related research.

XMRV: Examination of Viral Kinetics, Tissue Tropism, and Serological Markers of Infection - The study abstract.
XMRV Infection in Primates - Dr. Paul Cheney's detailed discussion of the study.
Monkey Business - Political cartoons commenting on the study.
More Monkeys - More politics.

More Evidence: Retroviruses Cause ME/CFS

2010-08-30T08:49:00.000-07:00

A study released last week by the NIH, Harvard Medical School, and the FDA (!) found murine leukemia retroviruses (MLV's) similar to XMRV in 68% of people with ME/CFS and 7% without. This validates the Mikovits XMRV study published last fall. More info:

Wall Street Journal article
New York Times article

The study was submitted to the National Acadamy of Sciences by Dr. Harvey Alter, who is apparently a big cheese in research circles, and I believe it's going to be hard for the naysayers to ignore this. I am hopeful that this will lead to some clinical trials of anti-retrovirals on ME/CFS patients soon, and perhaps effective treatments for us someday soon.

Update: A study by Dr. Kenny de Meirleir in Belgium is about to released. This study also found retroviruses in ME/CFS patients.

One Doctor's Success using Anti-Retrovirals - On Herself

Meanwhile, a physician in Santa Fe, Jamie Deckoff-Jones, and her daughter haven't been waiting for the drug companies and the government to get around to funding trials. They've already discovered that HIV drugs can help at least some people with ME/CFS.

Both Dr. Deckoff and her daughter have ME/CFS and both tested positive for XMRV. They have been trying the anti-retroviral drugs that have been found to stop XMRV in vitro (AZT, raltegravir, and tenofovir) and both are hugely improved.

A year ago both Dr. Deckoff and her daughter were able to spend only a few minutes per day out of bed. Last week Dr. Deckoff traveled to Reno for an ME/CFS conference, and her daughter has enrolled in community college.

Details on Dr. Deckoff's blog, here:

May 2010 - details on antiretroviral treatment regime
August 2010 - dramatic improvement!

This, along with the new Alter study, is possibly the most hopeful thing I have read about ME/CFS since the Mikovits XMRV study last fall. However, other XMRV-positive people who have tried the same drugs have not had the same improvement - but they weren't being guided by a physician who has the illness herself. Dr. Deckoff has had to tinker with dosages and has gone on and off some of the drugs over time to find the right combination and progression. It's apparently pretty tricky to deal with this virus.

Dr. Deckoff's blog is full of more information about other treatments for ME/CFS and other possibly related illnesses such as Lyme. Her perspective, as a physician who has ME/CFS herself, is invaluable. She tried Lyme treatments for years herself; her experience and conclusions make me very glad I didn't do antibiotics after I tested positive for Lyme and Bartonella last fall.

Yet Another Name Idea

Will there ever be an appropriate name for this illness? One that's less misleading, less damaging - and less insulting - than the CDC's loathesome propaganda invention?

Dr. Joe Burrascano, well known authority on Lyme disease, will be proposing "HGRV" (Human Gamma Retro Virus) for the name of the virus, and "HGRAD" (Human Gamma Retrovirus Associated Disease) for the name of the illness when he attends the upcoming NIH retroviral conference this September. Read more

Is it in the Blood Supply?

Australia, New Zealand, Canada, and now the UK have banned people with ME/CFS from donating blood. Why hasn't the US done the same? Dr. Louis Katz, "a specialist in infectious diseases and a prominent figure in national blood banking organizations," explains the current situation. Watch his presentation to the CFIDS Association of America.

Coverup?

And finally, here is a documentary - made seventeen years ago! - that shows clearly how radically ME/CFS differs from chronic fatigue, and how the CDC covered this up. I've only managed to watch the first two parts so far, and they made me want to cry.

Cardio and Blood Volume Links

2010-08-13T05:44:00.000-07:00

Quick links to research and treatment related to low blood volume and cardiac dysfunction in people with CFS/ME:

Dr. Martin Lerner:
Frequently Asked Questions: Cardiac abnormalities in CFS patients; diagnosis; treatment of EBV, HCMV and HHV6; recent research.

Dr. Lerner on his Long Lerm Antiviral Treatment Study: The effectiveness of long term antiviral therapy on CFS and orthostatic intolerance in 142 patients seen more than 7000 times over six years.

Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome

David H. P. Streeten, MB, DPhil, FRCP, FACP and David S. Bell, MD, FAAP:
Circulating Blood Volume in Chronic Fatigue Syndrome

Dr. Jacob Teitelbaum:
Treating Low Blood Volume and Decreased Heart Function in CFS

Note that the above papers and articles are just the tip of the iceberg; there is a great deal of information available on studies and other evidence supporting the connection between CFS, low blood volume, and cardiomyopathy.

Dr. Judy Mikovits, lead researcher in the recent study linking CFS/ME with the XMRV retrovirus, believes that XMRV impairs the immune system in such a way that other pathogens, such as EBV, HCMV, and HHV6, can thrive.

Until this enabling relationship is proven and effective treatments for XMRV are found, Dr. Lerner's antiviral treatment makes a great deal of sense, especially given his well-documented success.

Update: Read this newsletter from Dr. David Bell, who treated CFS patients for over 25 years. Dr. Bell has some interesting insights into the XMRV research to date as well as the political context surrounding CFS-related research.

Dr. Bell also lists a number of readily available lab tests which he believes can be used to detect and/or confirm the presence of CFS in patients, including echocardiogram with cardiac output while standing and IVRT interrogation with oxygen.

Quick link to this page: http://tinyurl.com/cfs-cardio

Cause of Death

2010-02-05T06:49:00.000-08:00

CFS patients who died of cancer, heart failure, or suicide had much shorter lifespans than the general population, according to a 2004 study:

Average age of cancer deaths:

ME/CFS – 47.8 years
Avg population – 72.0 years
Difference – 24.2 years

Average age of heart failure deaths:

ME/CFS – 58.7 years
Avg population – 83.1 years
Difference – 24.4 years

Average age of suicide deaths:

ME/CFS – 39.5 years
Avg population – 48.0 years
Difference – 8.5 years

The dramatic results of this preliminary study begs the question: why hasn't more research been done in this area?

Imagine the impact on the potential funding for research into ME/CFIDS/XMRV if a more comprehensive study produced the same results - and got the kind of coverage in the media that the WPI XMRV study did.

More information:

Causes of Death Among Patients With Chronic Fatigue Syndrome, Jason et al - The original study. Also here. See also Dr. Jason's web site.
Causes of Death among Patients with Chronic Fatigue Syndrome - A Dig Deep News blog post. Summary and links.
Cause of Death among Patients with Chronic Fatigue Syndrome - Phoenix Rising forum thread.

Horror Statistics from the US Government

2009-10-31T09:45:00.000-07:00

Government statistics show an appalling neglect of ME/CFIDS research which is costing the US economy billions. From the CDC and NIH web sites:

Number of people in the US with HIV or AIDS, diagnosed or undiagnosed: 1.1 million
Number of new Lyme cases reported in the US between 1990 and 2008: 328,128
Number of people in the US with CFS: 1+ million (tens of millions more have "similar fatiguing illnesses" but don't meet the CDC's strict "research" criteria)

NIH money to be spent on HIV/AIDS research in 2010: $3 billion
NIH money to be spent on Lyme disease research in 2010: $23 million
NIH money to be spent on CFS research in 2010: $3 million (yes, you read that right. One thousand times less than HIV/AIDS!)

Number of categories getting more research money than CFS: 209
Number of categories getting less research money than CFS: 2

And yet...

Dr. Nancy Klimas told the New York Times:

My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. [emphasis added]

I don't mean to pick on HIV/AIDS and Lyme disease. (I was recently diagnosed with Lyme disease myself.) For perspective, here are some other examples of NIH funding categories for 2010:

hay fever, $6 million
Tourette Syndrome, $9 million
Carcot-Marie-Tooth Disease, $13 million
homelessness, $13 million
methamphetamine, $70 million
Small Pox, $98 million
violence research, $191 million
influenza, $212 million
health effects of climate change, $300 million
nanotechnology, $326 million
tobacco, $326 million
depression, $418 million
obesity, $687 million
networking and information technology R&D, $950 million
drug abuse, $1 billion
substance abuse, $1.8 billion
health disparities, $2.7 billion
bioengineering, $2.9 billion
biotechnology, $5.5 billion

What's wrong with this picture?

Maybe the CDC's Dr. William Reeves can clarify things for us. Speaking about the recent discovery of the connection between ME/CFIDS and the XMRV retrovirus, he told the New York Times:

"If I don’t know the nature of the cases and controls, I can’t interpret the findings," Dr. Reeves said. "We and others are looking at our own specimens and trying to confirm it,” he said, adding, “If we validate it, great. My expectation is that we will not." [emphasis added]

How's that for scientific objectivity?

Hillary Johnson, author of the book Osler's Web, is very familiar with the CDC's approach to "CFS." Here's a sample of what she thinks of Dr. Reeves' opinions:

Let’s start with Reeves’ comment: "Until the work is independently verified, the report represents a single pilot study."

Blood samples from one-hundred plus patients? Over 200 healthy controls? The phylogenetic tree established? The results confirmed in THREE labs—the Cleveland Clinic, the National Cancer Institute, the WPI? Lab contaminants ruled out using three different tests? That's a pilot study?

About the XMRV researchers and Bill Reeves' "surprise" that such a prestigious journal as Science would publish their study, Hillary adds:

These collaborators didn’t just arrive on the scene last month from Mars; they knew going into this work what the CDC did to Elaine DeFreitas and her retrovirus finding in 1991. They understood the politics. They were aware of the agency’s multi-million dollar propaganda war on a million very sick people. They were prepared. They CDC-proofed this study. The rigor in the Mikovits-Ruscetti-Silverman paper was such that Science had to take the paper.

The privately funded Whittemore Peterson Institute, which led the XMRV study, says this:

Is the government doing enough for ME/CFS?

NO. The Centers for Disease Control (CDC) estimates from 1-4 million people in the U.S. have chronic fatigue syndrome (ME/CFS) and that approximately 80% of chronic fatigue syndrome (ME/CFS) cases in the U.S. are undiagnosed. The average annual costs per family, including financial losses due to unemployment, are about $25,000 a year. Overall chronic fatigue syndrome (ME/CFS) is believed to cost the US economy at least $25 billion dollars a year [emphasis added] and perhaps much more. CDC studies indicate that chronic fatigue syndrome (ME/CFS) patients as a group have disability rates similar to people with multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other serious diseases. Despite its prevalence, severity and high economic costs [emphasis added] chronic fatigue syndrome (ME/CFS) ranks near the bottom in funding of the over 200 diseases and conditions which the NIH funds.

Twenty-five billion dollars every year?

So what can we do about the US Government's monstrous and malicious neglect of the millions of people stricken with this disease, and their families - and cavalier disregard for those of us who foot the multi-billion dollar bill for the loss of productivity of the people disabled by this disease and the ineffective medical care available to them?

Wake up, Americans. Even if you don't have ME/CFIDS, even if you don't know anyone who has it, the official policies of the NIH and the CDC - their refusal to support serious efforts to understand and eradicate this disease - is having an impact on you right now. This disease is costing you money!

Comments welcome.

Update: In her blog, Life as we know it, Karen Campbell of CFS Facts has posted a different perspective on some of these numbers in NIH Research Statistics Show Fundamental Inequality. Karen lists a "research dollars per patient" for people suffering from various diseases, including ME/CFIDS. See also her blog "Letter Writing Time!" and this forum post.

Thanks to Hillary Johnson and her blog post about the NIH's nifty new search engine, without which I wouldn't have discovered these horrifying statistics.

Thanks to Peggy Munson and her blog post Fly Away to XAND-ado, or Where Is Elaine DeFreitas? for inspiration and background material for this post.

Naming the Disease

2009-10-11T11:40:00.000-07:00

What's in a name? In this case, a whole lot of pain.

The disease in question has had many names over the years, from the insulting "yuppie flu" to the much more accurately descriptive "chronic mono" or "chronic Epstein-Barr Virus" or "post-viral syndrome."

The term "Myalgic Encephalomyelitis," or M.E., was in widespread use throughout the world until the US agency the CDC decided to promote the spread of disinformation and misunderstanding - and discredit both victims and researchers - with the appallingly misleading name, "chronic fatigue syndrome," or CFS.

Desperate victims dreamed up the acronym CFIDS, for "Chronic Fatigue and Immune Dysfunction Syndrome," to try to add some actual useful description to the CDC's loathsome misnomer, but that term never really caught on among either the general public or medical and health care professionals, who for the most part to this day persist in referring to this devastating disease as "chronic fatigue."

More recently, people suffering from the disease have begun to use a combination of acronyms, such as ME/CFIDS or CFS/ME/FM (for the related illness Fibromyalgia), but I feel this really only makes ourselves feel a little better; nobody else seems to get it. Many other names have also been used, but tragically the "chronic fatigue" misnomer is the one that stuck.

Now Hillary Johnson says:

The real scientists have arrived and they'll be studying XMRV-associated neuro-immune disease, a.k.a., XAND.

The name ["chronic fatigue syndrome"] ginned up [by the CDC] in Atlanta in 1988 to make sure disability insurers would not be required to pay out on disability policies and the public would assume the malady was a new category of mental illness? One can imagine, or simply hope, that the phrase is about to be jettisoned into outer space where one can fantasize it entering the band of space trash circling the earth. For months, the team at WPI has been playing around with names. In lighter moments, their favorite became “I.T.V.S.,” the acronym for, “It’s the Virus, Stupid.”

So should I rename this blog "XAND Watch" or "ITVS Campaign"? Or maybe "XMRV Hunter"? How about just "Antidote for Stupid"?

Let's hope somebody comes up with a more catchy - and compelling - name soon.

XMRV retrovirus linked to ME/CFIDS

2009-10-08T16:36:00.000-07:00

A new study links the XMRV retrovirus to "CFS." Could this be the cause?

A comprehensive study by a consortium including the Whittemore Peterson Institute, the NIH's National Cancer Institute, and The Lerner Research Institute of the Cleveland Clinic Foundation was announced today. This study demonstrates a strong association between a mouse leukemia virus, XMRV, and "Chronic Fatigue Syndrome," better known as ME/CFIDS.

Since the NIH is involved (through their cancer research arm), a lot of people who normally dismiss the illness as a somatisation disorder (i.e. just another hysterical psychological trip) are taking the findings seriously.

Even CFS arch-villian William Reeves, the enemy of everyone who suffers from this illness, claims he's already got his little elves at the CDC working on replicating the study. Of course, based on past history, more likely they are industriously trying to not replicate it.

Update: Read these commentaries on this landmark announcement:

Peggy's Blog - Powerful and moving essay by Peggy Munson about ME/XMRV, her personal experiences with the disease, and a broad look at the big picture. A must read if you or someone you care about has been diagnosed with ME, "CFIDS," "Chronic Fatigue Syndrome," Fibromyalgia, or MCS.
Blog: Osler's Web - Hillary Johnson's triumphant declaration of victory over the dark forces in the US government's "health" agencies, the CDC and NIH, whose criminal actions prolonged the suffering of millions of victims of this terrible disease and resulted in countless unnecessary deaths.

News articles about the announcement:

The Independent: Has Science Found the Cause of ME? - "...the senior author of the study, Judy Mikovits ... said further blood tests have revealed that more than 95 per cent of patients with the syndrome have antibodies to the virus – indicating they have been infected with XMRV... 'With those numbers, I would say, yes we've found the cause of chronic fatigue syndrome.'"
Dance with Shadows: XMRV Virus Linked to Chronic Fatigue, Says Study - "'Just like you cannot have AIDS without HIV, I believe you won’t be able to find a case of chronic-fatigue syndrome without XMRV,' ... Dr Mikovits said."
Nature Magazine: Virus Linked to Chronic Fatigue Syndrome - "'I can't wait to be able to tell my patients,' says Mikovits... 'It's going to knock their socks off. They've had such a stigma. People have just assumed they were just complainers who didn't handle stress well.'" Nature Magazine rarely reports on CFIDS, so this study must have really impressed them.
Reuters: Study Isolates Virus in Chronic Fatigue Sufferers - "'You can imagine a number of combination therapies that could be quite effective and could at least be used in clinical trials right away,' Mikovits said in a telephone interview."
NY Times: Virus Is Found in Many With Chronic Fatigue Syndrome - "'I think this establishes what had always been considered a psychiatric disease as an infectious disease,' said Dr. Mikovits. ... [She] said she and her colleagues were drawing up plans to test antiretroviral drugs — some of the same ones used to treat HIV infection — to see whether they could help patients with chronic fatigue."
Suite 101.com: New XMRV Study Not the First to Find a Retroviral Link - "The study group of Elaine DeFreitas reported a link between CFS/ME and retroviruses back in 1991." and "Immunovirologist Michael Holmes described retroviral activity in cells of CFS/ME patients as early as 1986." Hillary Johnson documents the CDC's vicious attack on DeFrietas, which eventually forced her to leave the field.

Peggy Munson notes: Please ignore the news idiots who use the term "chronic fatigue" instead of ME/CFIDS. Idiopathic chronic fatigue affects some 25 percent of the population and does not resemble ME/CFIDS at all. Hopefully the new research will help the media understand that that is like calling AIDS "chronic weight loss." The preferred term for patients is still ME, or myalgic encephalomyelitis.

Sadly, it's not just the news idiots. I've seen dozens of health care providers - from MD's to naturopaths to acupuncturists to energy healers - in the fifteen years since I was diagnosed with "CFS," and I can't think of a single one that didn't use the term "chronic fatigue" when referring to my disease.

Peggy's Blog has links to many more articles.

Official information:

Press Release: Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome - The official press release in PDF form.
Research Shows a Potential Retroviral Link Between XMRV and Chronic Fatigue Syndrome - The Cleveland Clinic's official press release.
Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome - The National Cancer Institute's official announcement includes the electron micrograph of the XMRV retrovirus which is displayed at the top of this post.
Science Magazine: Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome - Abstract from the study.
The Whittemore Peterson Institute - The official site of the research facility that led the study.
The Cleveland Clinic's Lerner Research Institute - Another research facility which participated in the study.

To put this announcement in perspective, please read Hillary Johnson's speech "The Why" and then ponder on how much sooner this discovery might have been made - and the waste of innumerable years and countless lives avoided - had the people at the US Government's official agency responsible for investigating this disease actually done their jobs instead of undermining research and aggressively attempting to discredit the victims of the illness and people who believed them.

You might also want to review the discussion of Dr. Lerner's research into viral treatments of this illness in the July 21 entry of this blog.

Advice for Friends and Physicians; More on de Merlier, Cheney

2009-09-08T06:22:00.000-07:00

Do you have a friend or relative who has CFIDS? How should you talk about their illness?

Like almost everyone who has CFIDS, I've been subjected to comments which are, at best, insensitive and thoughtless. Coming from physicians or other health care providers, such comments can be devastating - and can seriously undermine my confidence in that provider's ability to diagnose or treat me effectively. Here's some advice if you know someone who has CFIDS:

Five Things You Should Never Say to Someone with Chronic Fatigue Syndrome

To the above advice I would add this: do not refer to CFIDS as "chronic fatigue." Not ever. Doing so telegraphs that you do not understand the illness and that you do not take it seriously. Use the acronyms CFIDS, ME, or CFS, or say the name: Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, or Chronic Fatigue and Immune Dysfunction Syndrome.

Do not insult your friend or your patient by lumping them with people who are "just tired all the time." That's not what this illness is. Not even close. (Read the quote from Lauren Hillenbrand in the heading of this blog and then read the CFS/ME Overviews section of my previous post, An Emerging Understanding.)

De Meirleir

Dr. Kenny de Meirleir's assertion that he has discovered the "True Nature of ME/CFS" has aroused considerable skepticism. Here are some commentaries:

Cheney

Dr. Paul Cheney's announcements in April 2009 have also inspired some responses, particularly regarding his new position on omega-6 and omega-3 oils:

Dr. Cheney Goes His Own Way - Again

Advocacy

And finally, two articles in the realm of advocacy ask why there is so little being done to find the cause(s) of CFS/ME/CFIDS and effective treatments:

CFS Patient Groups Cowed by the CDC? - John Anderson's scathing indictment on the failure of federal programs to address this illness or to even take it seriously. John points out that CFS advocacy groups have consistently failed to confront the government agencies regarding this neglect.

The Why - Hillary Johnson's powerful and moving speech, given at the Invest in M.E. conference in London earlier this year. This is the speech which inspired John Anderson's comments.

An Emerging Understanding

2009-07-21T09:24:00.001-07:00

Recent articles about the illness in question suggest an increasingly coherent and comprehensive understanding of the illness may be emerging.

Note: This illness is variously known as CFIDS, CFS, ME, and Fibromyalgia. The acronyms stand for "Chronic Fatigue and Immune Dysfunction Syndrome," "Chronic Fatigue Syndrome," "Myalgic Encephalomyelitis." I'll use a combination of the acronyms ME and CFIDS.

Diverse paths of investigation appear to be converging on a connection between mitochondrial dysfunction, cardiomyopathy, and immune dysregulation; secondary factors such as leaky gut and central nervous system abnormalities; and possible causative factors such as viral activity and neurotoxins. These connections provide a complex but compelling picture of the workings of this heretofore baffling disease.

In this model, an initial insult (viral, physical trauma, or environmental toxin) causes mitochondrial failure leading to secondary cardiomyopathy, which in turn leads to immune dysregulation which permits ongoing viral activity. This viral activity sustains the mitochondrial dysfunction, creating a stable closed-loop system of persistent illness which is very difficult to disrupt.

At the same time, the low oxygen environment resulting from the cardiomyopathy leads to leaky gut and the overgrowth of organisms in the digestive system which are normally controlled or not present in healthy people. These organisms produce toxins which also degrade mitochondrial function and impede other systems critical to health, thus further reinforcing the closed-loop system.

ME/CFIDS Overviews

Come to bed with ME - A brief introduction to the experience of being ill with ME/CFIDS. See also A Sudden Illness by Lauren Hillenbrand and Olympian Battles CFIDS, an interview with legendary soccer star Michelle Akers.

Evidence that ME/CFS is not a somatisation disorder - ME/CFS advocate Margaret Williams discusses heart failure and post-exertional fatigue and their connection to other CFS symptoms such as cognitive impairment, persistent muscle and joint pain, headaches, and sleep disorders. This article contains a concise summary of Dr. Paul Cheney's cardiomyopathy theory (more on Cheney below) and also a powerful description of the impact on the quality of life of patients with this illness.

From the article:
“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.” (Dr Daniel L Peterson: Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)

"In comparison with other chronic illnesses such as multiple sclerosis, end-stage renal disease and heart disease, patients with (ME)CFS show markedly higher levels of disability." (Quality of Life and Symptom Severity for Individuals with Chronic Fatigue Syndrome: Findings from a Randomised Clinical Trial. RR Taylor. American Journal of Occupational Therapy 2004:58:35-43)

“There is evidence that the patients with this illness experience a level of disability that is equal to that of patients with late-stage AIDS, patients undergoing chemotherapy (and) patients with multiple sclerosis.” (Professor Nancy Klimas, University of Miami, speaking at the launch of the US CDC campaign to raise awareness of ME/CFS, 3 November 2006, National Press Club, Washington DC)

Laboratory Marker

Dr. Kenny De Meirleir's "News Heard Round the World" - Dr. De Meirleir announces the discovery of a marker for CFS: high levels of the neurotoxin hydrogen sulfide (H2S) in the urine. He introduces an inexpensive lab test for H2S and connects H2S to many of the symptoms suffered by CFS/ME patients - and to mitochondrial dysfunction.

ME/CFIDS: Mitochondrial Dysfunction, Oxygen Toxicity, and Cardiomyopathy

CFS, The Central Cause: Mitochondrial Failure - Dr. Sarah Myhill describes what she believes is the underlying cause of CFS: cardiac failure secondary to mitochondrial dysfunction. This page includes an excellent discussion of the delayed fatigue phenomenon that I have experienced consistently throughout my illness and explains the causes of many of the other symptoms experienced by people with CFS (including me). Dr. Myhill suggests testing for ATP production and other markers which she believes can provide a definitive diagnostic picture of CFS. She also touches on strategies for recovery.

Dr. Paul Cheney's complex cardiac failure/mitochondrial dysfunction/oxygen toxicity model is based on Dr. Arnold Peckerman's study (see below) and backed by 20 years of research into CFS and treatment of many severely ill CFS patients. In my opinion Dr. Cheney's grasp of the characteristics and progression of the illness is second to none.

Dr. Cheney also makes a connection between mitochondrial dysfunction, immune system dysregulation, and chronic viral activity (see below for more on viral involvement in CFS).

Here are reports on Dr. Cheney's recent lecture in Virginia:

Paul Cheney Talk, Fairfax VA - Chris (Consuegra?) encapsulates Paul Cheney's three hour lecture in Fairfax, VA, on April 25, 2009. Cheney discusses his theories about oxygen toxicity and diastolic dysfunction as the underlying causes of CFS, and his current treatment plan.
Judy Roget's Corrections - Judy suggests corrections to some of Chris' comments about Dr. Cheney's lecture.
Dr. Cheney Goes His Own Way: The Virginia 2009 Lecture - Cort summarizes Chris' comments about the Fairfax Lecture.

Dr. Cheney currently has two new web sites under construction:

You may also wish to read Cheney's seminal lecture, The Heart of the Matter: CFS & Cardiac Issues, at the CFS & FM Support Group of Dallas-Fort Worth, and keep an eye out for publication of his latest lectures on DVD.

Slow Flow - Dr. Suzanne Vernon says that as many as 70% of people with CFIDS also have POTS (postural orthostatic tachycardia syndrome). Not enough oxygen is getting to our brains. She also cites a study which showed decreased blood volume in people with CFIDS.

Antiviral Treatments

Cardiac Insufficieny Hypothesis - Dr. A. Martin Lerner argues that a subset of ME/CFS exists in which chronic mononucleosis, caused by a virus such as Epstein Barr, cytolomegalovirus, or HHV6, is a factor - and that the virus infection persists in the heart and contributes to cardiac dysfunction. Dr. Lerner holds several US patents related to diagnosis and treatment of CFS/ME. This article contains links to articles related to Paul Cheney's work.

A clinical trial by Dr. Lerner et al showed CFS patients treated with valacyclovir and/or valganciclovir experienced marked improvement. More Lerner articles are here.

Physicians Encouraged by Valcyte - Dr. Jose Montoya's study suggests that CFS can be caused by HHV-6 and/or Epstein Barr virus, and that Valcyte might be an effective treatment for CFS when HHV-6 is involved.

CFIDS/CFS vs. Myalgic Encephalomyelitis

The Hummingbirds' Foundation for M.E. - M.E. activist Jodi Basset makes an emphatic distinction between Myalgic Encephalomyelitis and CFS/CFIDS. She connects M.E. with low blood volume and cardiac insufficiency, CNS and spinal abnormalities, and presents a comprehensive list of tests which can be used to diagnose M.E.

This site contains a massive amount of material relevant to these illnesses. Also, Jodi's personal story is a powerful cautionary tale about the risks involved in taking advice from physicians (and others) who do not understand this illness.

The Nightingale Foundation - Dr. Byron Hyde also makes a distinction between M.E. and CFS and says CFS is not a disease but M.E. is - and asserts that M.E. can be diagnosed by specific tests.

Web Sites

CFIDS Association of America - Information on diagnosis, treatment, research, and advocacy.

Maylgic Encephalomyelitis Society of America - This site's home page makes a powerful distinction between the illness commonly known as Chronic Fatigue Syndrome and the symptom of fatigue.

FightFM - A web site devoted to Fibromyalgia which contains a large body of information relevant to CFS/ME/CFIDS.

Phoenix Rising - News about ME/CFS and Fibromyalgia.

Background Information

Peckerman et al - Study by Dr. Arnold Peckerman and others demonstrating that patients with severe CFS had significantly lower stroke volume and cardiac output than controls and less ill patients. This is the study which on which Dr. Paul Cheney and others have based subsequent research and treatment regimes.

Low Blood Volume and CFIDS - A discussion of the phenomenon of low blood volume which has been observed in CFIDS patients, and the connection with low blood pressure and other symptoms related to CFIDS and Fibromyalgia.

Cortisol Treatment for FM/CFS - A study suggesting cortisol can provide relief of symptoms. I've tried cortisol myself, with dreadful results, so I'm skeptical.