2 AM

Awake, as I often am at this time of night, sick… nausea, pain. Lots of angry comments, as expected. Why did I put that out there? I’ve already pissed off scientists, doctors and now quite a few patients. Why would I want to do that? Am I trying to disidentify? I feel pretty identified as I write this. Why did I write something so critical? Because it’s my truth? That’s pretty presumptuous. Why should anyone care? The important part of the post is the medicine, which received very little comment. Interestingly, there were positive comments back channel from doctors about the same paragraph that made patients angry.

I’m not a writer. I’ve never written before. The blog was Ali’s idea. I felt that I was finally emerging from the medical darkness and that sharing my ideas as they were unfolding might have value. Blogging is interactive, so perfect for bidirectional running commentary. The anonymity of the internet makes it a bit tough for the blogger if you have controversial views of a complex issue, but so far it’s been worth it. I’m OK with the anger (within limits). I’ve written about anger here quite a bit. I’m angry too. And I have no interest in speaking with my “inside voice”, nor am I encouraging anyone else to do so. What I am trying to do is frame the discussion in a way that evokes compassion in people not living with the disease.

If you don’t like the comparison to a level of suffering outside of the industrialized world, then let’s talk about suffering in the world of cutting edge medicine. As a hospital based physician for many years, I learned that the myriad ways in which the human body can become deranged makes for a veritable chamber of horrors. ME/CFS patients don’t have any corner on suffering, though it’s a contender when the disease gets really severe. I saw unbelievable things as an ER doctor. There are lots and lots of horrible ways to get sick. What is different about our experience is the incredible degree of disbelief and misunderstanding we’ve had to endure. As a patient group, we’ve been stripped of our dignity. We’re not unique that way either, but there are an awful lot of us and it’s gone on for a really long time.

Where do we go from here? Medically it’s not that tough. The doctors need to treat the patients with very limited information, as usual. Their awareness needs to be raised so that they know how to approach the illness, but if it’s put on their radar, they can handle it. It seems clear from the animal retrovirology literature that the scientists can handle it too, if they stay engaged. That’s the big if right now. We need them to see the big picture, that it’s bigger than XMRV. Big enough for careers to be made and prizes claimed. We need to find a way to inspire the compassion that we deserve. We’ve all been wronged.

Personally, I find it helpful to remember that many people suffer more than I do. My illness has been my greatest teacher. I can’t control what happens, but my response to it is all mine. There are still amazing moments. I’ve had some wonderful moments reading comments on this blog – moments of connection. Now, from some of the comments, I guess I must be getting close to something that’s festering. I questioned a mindset that’s ineffective. What now?

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33 thoughts on “2 AM

  1. >Just continue to speak up as you have done over the last year. You can't please them all even if you try very hard.

    Severe ME though is a completely different ball game. The pain is incredible, the cognitive probs are bad and the recovery time from walking to the toilet is incredible. It takes me a day before I have enough power in my legs again to walk to the toilet again.

    Exercising for Severe ME, just forget it, surviving is hard enough.

  2. >Yes my MECFS is bad but it could be a lot worse and thank god for the things I can do.

    Like you say one of the worst things about this illness is the fact people still dont believe us, most of my family *dont get it*
    and that makes me feel sad, which then makes me feel more sick.

    I long for the day MECFS is on the news or in the newspapers here in the UK and everyone sees what the cause was and people will then say sorry to all the people they know who have MECFS.

    Im sure my mum and dad will be kinder to me, people need to see it in the media, they need to see the doctors believing us – that will be a very happy day! that will be the day we have won, the day I know all my family and friends finally have *got it!!*

    your the best, everything you write is great. its the truth.

    love Crafter Kate xxxxxxxxxx

  3. >One thought here.

    We can't afford to have the press be our enemies, and I actually don't think they are.

    The question is:

    How can we use the press to help us to win the battle against the enemies that we actually do have?

    Best, Lisa

  4. >My M.E. wax and wane. It changes from very severe to a stage where I can go outside and life is easier.

    But the sever state is difficult. You lie there in your bed and your humanity is slowly sliced away bit by bit until all that you are is a being. You are being, but you dont really care anymore if you are dying or being. Sometimes you look at the clock and are happy that yet another hour have past and that you soon can go to sleep again. Theres no dream and no hope anymore, because I am using all my energy to just survive.

    I live alone and the last time anyone touched me was in January when my doctor shook my hand. The last time someone kissed me, the last time I had sex, years and years ago.

    When I am better I take part in the fight for treatment, for research. And as an XMRV positive I hate when I am told to use my inside voice. Because I have had no voice for so long that when I have found my voice I will shout and make my self heard.

  5. >Agreed.
    what we all want is the same CARE, RESPECT and TREATMENT that other illnesses in the developed world get.
    UK / USA are very rich countries.

    We need the same understanding as those with diabetes, MS, heart disease, alzheimer's.

    At the moment we are on the sidelines, we are dismissed. That has to change and I believe thats what WPI stands for, they are trying to change the way we are treated and I believe in time they will turn this illness around.


  6. >I think you're right in that there is definitely an element of whining and entitlement in the ME/CFS patient community, but, to be honest that is true of ANY patient community. Suffering sometimes brings out the worst in people.

    It's important to realize that people who spend a lot of time posting on message boards, blogs, facebook, sending you mail, etc. are not necessarily a representative sample of the behavior of the entire patient base. The technology and community itself are filters.

    It's also important to realize that there are serious secondary effects of having any type disability. You've been able to survive, financially, and keep your family intact in spite of being unable to function. There are stories of people who are not so fortunate – homelessness, poverty, having their children taken away – and these voices aren't often able to be heard. A disabled person is only as "comfortable" as their support network helps them to be.

  7. >Dr. Speedy,

    I've been to that place where turning over was more "exercise" than I could stand. I'm so sorry that that is where you are caught. I want to thank you for your blog. As bad as things are for you, you advocate for others. Keep up the good work.


  8. >Dr. Jamie, you just need to keep on doing what you are doing. There are many who just read the blog and never comment, and we are indeed all colored by past negative experiences. Yours is a very important voice and you are helping us all. If you think of the patient community as a family then the squabbles seem to be very typical family dynamics. Just keep on doing what you are doing.

  9. >Dear Dr Deckoff-Jones,

    Thank you for your kind words and for being a tremendous advocate for all of us. Change is coming, we just wish it would be as Speedy as ME.

    Keep up the good work.

  10. >Jamie- I am sorry that you are up in the night struggling with this disease and then having to read angry blogs. There are likely many ME sufferers who also have mental health issue and like being angry. Or at least must get something from it. At age 74 I have come to believe that they have a right to rant but I have a right not to listen. Go ahead and erase them. It might feel good.
    You are doing great good with your writing. I hope you will continue. It helps me to be patient with my illness. Marilyn

  11. >I disagree with Dr. Deckoff-Jones on this point.

    Recently we have had people who say they are our "advocates" trying to push down our throats a "unity" theory which requires that we immediately stop disagreeing and do what they say. When this happens to me, my reaction is always the same: "Hell NO!"

    I think what I think and I do what I do. And I have found, after nearly a quarter of a century with this illness, that being nice and doing what I am told simply does not work. It always makes the situation worse.

    So, I disagree, Dr. Deckoff-Jones. We are individuals, and even when we are sick, we remain individuals. Do not ask that I become a robot who takes orders from others just because my body is ill.

    There are degrees of misfortune with this illness, as there are with any illness or any situation known to man. We all suffer from varying causes to varying degrees. That does not mean that I need to stop demanding research into an illness that has cost me my life and is now threatening the lives of my child, my grandchildren and my great grandchild. No "inside voices" for me. This disease is not nice. Why should we try to sugar-coat it when we tell others about it?

    Telling someone with this illness that he or she is not entitled to be angry and express it is like telling someone to mind their manners when they make an emergency 911 call. This is an emergency and we need help now. If some people are offended that our manners are not perfect, then let them be offended. Getting research and treatment is much more important.

    Patricia Carter

  12. >I forgot to mention it in the last post, but I agree wholeheartedly with the view that we should be aware that we are not the only ones suffering in the world. I have two children with CFS, in addition to myself, but I hear all the time about people worse off than us – kids with terminal cancer who are dying, for instance.

    I think reminding ourselves that others suffer and being grateful for every small positive thing in our lives is a healthy worldview. I know that looking for reasons to feel grateful in my own life has led directly to more joy and less stress.

    Empathizing with others in no way diminishes our own suffering and may even make others more open to hearing about our own problems and needs.


  13. >Jamie – I totally agree with your perspective here. I have lived with ME for 20+ years and have found that my thinking greatly influences the outcome of my days and how I cope/deal with this illness.

    I do agree we all need to come together in unity to create a collecctive grass-roots revolt as to the abhorent treatment of ME these past decades. But doing so, in my mind at least, does not require me to check what I hold to be my core beliefs or convictions, at the door.

    It simply means that I agree that by coming together with millions of ME sufferers demanding a change in treatement, respect and research is much more powerful than my yelling at the top of my lungs…by myself.

    I am one of those who has given up medicating my ME because of the horrendous side-affects I have repeatedly suffered as a result. I too often found that medication caused many more problems for me than they helped. So I now use natural remedies to ease the affects of this horrid illness.

    I also agree with you that there is always someone who has it worse. I think of those in Japan at this moment.

    But even on a personal basis, last year I was homeless (lost my home due to mold) and lost every possession I owned. In December I lost my four-legged companion – a pug named Dekker.

    While the loss that comes with ME is relentless sometimes, my situation last year taught me that everything is temporal and there is always the possibility of changes that come that are better than what we lost.

    In other words, this moment is not etched in stone. While the view of ME is disgusting and disturbing today, it doesn't mean that things cannot change. And I personally believe, deep within me, that change is coming. Our time for recognition and help is on the horizon. I feel it.

    Unfortunately, I also lost more of my health as a result of the mold and the toxic chemicals that were sprayed into the building. But again, I really think how we choose to live – with ME or whatever – is all about perspective. I get to choose the lenses that I will view my life through.

    Sometimes a really bad day may change those lenses temporarily but again, I innately understand that at any given moment those lenses can, yet again, change.

    Lastly, I think -for me- my life is in my hands. While I expect to be treated with respect, recieve quality treatment, and expecte research to find a causal link, how my life ultimately turns out is mine and mine alone.

    Never for one minute, will I give power to those in the medical community or elsewhere to make my life better or worse. That distinction is mine and mine alone.

    I really enjoy reading your blog even when some of the technical stuff goes over my head.

    I think that you are here for just a time as this. I'm glad you are part of this journey with me (and us).

  14. >Your comments re:realizing that we aren't the only ones that are caught in the quagmire of suffering are valid. My daughter and I both have CFS and discussed this point last night. We remind ourselves of what we DO have in order to not become totally overcome by the challenges we face. Is it a head game? Probably but that is the one place we can control (well at least most of the time when the fog isn't too bad!)
    Does the scientific community need to step up their game and figure out what is causing this illness? Yes! But for those of us who just barely manage daily life…we are still waiting for those who know stuff to figure this one out!
    25 year veteran of the head game.

  15. >DANG that mold.
    I'm a charter/founding member of the Tahoe Truckee EAA (Experimental Aircraft Association)
    When I lost my house and all my possessions, nobody had ever heard of such a thing.
    Nobody doubted me though. They knew that I'm not the type to fake or exaggerate something like that.
    NOW the crap is laying waste all over Truckee and the CalFire volunteer Fire Dept. building on the airport had to be abandoned.
    That's pretty quick, to go from something that nobody ever heard of… to happening all around us, in just a few short years.
    Strangely, doctors seem unable to discern just how weird it is for thing to go from "never heard" to "EVERYONE'S heard" so quickly.

    Anyway, ever since that weirdness back in '85, I've gotten more bang for the buck by staying away from that crap, than any drug, therapy,
    Jedi Mindbody trick, magic mantra, crystal blue pursuasion… or anything else that all these desperate people tried doing.

    I know… nobody wants to hear it.
    But it's true.

  16. >This is your blog. If people don't like what you have to say they don't have to read it. Don't let their comments affect you. CFS/ME is controversial and full of unknowns. Suggestions and speculations may help spark ideas for research and treatment. Evaluation of research by an M.D. with CFS/ME is very valuable to me. Symptoms are extrememly variable and people have differing levels of illness. I have just entered a phase of feeling ill due to multiple stresors, but I have had this illness my whole life, I know I can and will improve. I have been so ill in the past I could not get out of bed and had so much pain I was suicidal, so I know why they can't think about the suffering of others in comparison to theirs. I was a critical care and ER nurse so I also saw a lot of horribly ill people and much suffering. However, I also had people tell me I was sicker than some of the patients in the ICU. I worked with nausea, pain, diarrhea and dizziness. We had a rule that we only called the doctors about fevers if the patient's was higher than mine. But, I still had some doctors treat me like I was imagining the whole thing, but the ones who knew me and the nurses I worked with thought I was very ill. It was interesting to me that the ones who knew the least about CFS/ME were the ones who made fun of it the most and were the most abusive to patients with it. They thought they had all the answers without ever reading the research.

  17. >Don't forget that people, and children among them, die of this disease or choose to die because the suffering is so intense.

    I tell myself that it can be worse, and has been worse. But nobody has the right to tell others they should count their blessings when you have no idea of their individual circumstances. That doesn't help anyone but does many

    You are priviledged in many ways, Dr Jamie, and I'm happy for you, but please don't leash out on those who are much less fortunate.

    When people demand better (as in: equal) treatment, they don't just do that for themselves, they do it for those who are worse off and unable to fight for their rights. Should we just watch them suffer and tell them it might be worse?

    I certainly don't think so.

  18. >People suffer from awful illnesses in life, we all know that but what distinguishes M.E (especially severe M.E.), is the length of time that the suffering goes on for – without either resolution or death.
    Most people who are seriously ill, either receive treatment to alleviate the suffering or die, or both.
    M.E. is different. People remain severely ill for years upon years upon years and have to keep coping with this level of suffering for many more years than sufferers of many other illnesses.
    The severely affected endure ridiculous amounts of suffering surely equal to other awful illnesses but their suffering goes on and on and on.
    I don't know what's worse. Here is an example from a family member of mine – have a healthy life until the age of 37, get breast cancer and die at 39 or get severe M.E. at 16, have no quality of life from there on and spend the rest of your life bed bound and unable to function in constant distress and pain, with no understanding and very little sympathy from the outside world.
    People will be horrified at this comment – I don't say it lightly because my family member did die at 39 of cancer, leaving a husband and 2 young children behind – tragic and awful, we are all agreed BUT although her life was short, it was fruitful and full and her suffering was relatively short.
    Compare this to the 16 year old, bedridden with severe M.E. No chance to marry or find love, no children, no career and endless YEARS of suffering ahead.
    The worst illness that most people can think of is cancer, the one everyone is most scared of but there are worse and M.E. is one of them, not the only one but one of them. I make no apologies for my opinion.

  19. >I agree with the above. I went through a week or so of hoping I would get cancer because the chemo might kill of my viral load. This illness is not for sissies however we grow stronger in character by knowing we can handle the difficult. There is no real way to compare one illness to another and all of us have our own ways of coping. Last year I had hope that there would be answers from science that would help me be well. Guess I can hold that thought for another year–one day at a time. Love and good intentions for my fellow sufferers.

  20. >That "Sick at night" and reversed sleep cycle have been attributed to circadian rythym dysregulation caused by illness.

    You can't escape circadian rythym.

    But if this factor were mediated by environmental factors, this pushes it over to the "limbic kindling" slot.

    And if a kindling response are from engrams imposed by environmental factors, then it is conceivably possible to identify and remove them.

    Or so it would appear.

  21. >At the very least, "avoidance" is something we can work on while we wait for science to work out the bugs.


    CFS – Front End of Chemical Sensitivity
    By Janet Dauble
    (In the book A Clinician's Guide to Controversial Illnesses, Chronic Fatigue Syndrome, Fibromyalgia, Multiple Chemical Sensitivities, Renee Taylor, Fred Friedberg and Dr. Leonard Jason make the statement that "Multiple Chemical Sensitivities can best be differentiated from CFS and FMS due to the reactive nature of the illness upon exposure to relatively low levels of chemicals and other irritants, and the resolution of symptoms upon withdrawal from the chemicals or irritants." This seems obvious. However, as regards the thousands of people suffering from CFS and FM, this is not fully true. The true difference is that people with CFS and Fibromyalgia are reacting without knowing it (even beyond allergies they may know about). Thus, there is no difference between CFS, FMS and MCS except revealed truth.
    The truth that CFS for the most part is an unknown, not obvious, chronic reactive state of food, chemical, etc. sensitivity.


  22. >Dr. Jamie,

    You are phenomenal. I cannot tell you how much I respect, admire and appreciate your honesty, knowledge and candor. Please keep doing it!! There will always be detractors but we need your vision….more than you know!!! Thank you. No more words, you are just fantastic.

    Love, Sita

  23. >Jamie — you keep on writing whatever you choose to write. People have to learn that there will be disagreements, and that there is no one single truth out there. It's clear from the last 2 days, that many want only 'one' truth.

    Wild Patricia Carter said: "Recently we have had people who say they are our "advocates" trying to push down our throats a "unity" theory which requires that we immediately stop disagreeing and do what they say. "

    Wow, Patricia, if that isn't the pot calling the kettle black, I don't know what is. Your mecfsforums sole purpose is to push the XMRV hypothesis, and you and your cohorts have a RECORDED history of pushing out those who disagree.

    And Erik.

    We get it. You, and other patients at Tahoe were sickened by toxic mold. Or at least that was a huge part of the picture. That doesn't mean it is in other parts of the country, or even in other cohorts. But it clearly happened in Tahoe.

    And by the way, Tahoe wasn't the 'original' CFS epidemic.

    Thanks Jamie.

  24. >Dear Dr. Jamie,

    I treasure this thoughtful, informative blog, and am always happy when you post a new segment. Many thanks to Ali for encouraging you to write it. You are both very brave.

    Also, thanks to Dr. Speedy for his vivid description of severe ME: “…the recovery time from walking to the toilet is incredible. It takes me a day before I have enough power in my legs again to walk to the toilet again.”

  25. >You "questioned a mindset that's ineffective," the mindset that pwME feel we have a right to health. I have no idea where you got the idea that pwME feel we have the right to health. I will repeat what I said last time, I think it's very obvious we don't think we have a right to health, just a right to not be abused by our own governments when we are deathly ill.

    Of course many doctors are going to agree with you that we are complainers. It relieves them of the guilt they would have to harbor if they acknowledged they had been complicit in abusing us.

    We have not complained enough, imo. Complaining and protesting and making things very uncomfortable for our abusers is the ONLY thing that will get us the equal treatment we DESERVE.

  26. >In past posts you have expressed that you were dismayed at the unbelievable medical abuse pwME have written to you about.

    What's your point that 'there is something wrong with our expectation that we will be taken care of" when we get a disease, rather than abused? Of course I expect the medical profession and governments to do a minimally competent job. If they had done that I would be grateful.

    When I practiced as a lawyer, I didn't intentionally lose my cases and then turn around and sue my clients for no reason and tell them they should be grateful I'm conducting malpractice on them because some people in Cambodia have it worse than they do. That's insane and insulting.

    What's the point of having insurance, doctors and government if they don't do their jobs? Let's just have anarchy, at least it might be more fun. : )

  27. >Jamie, no, you "don't get it".

    The underlying commonality of the similar process that I observed at Tahoe had been manifesting all over the world, suggesting a specificity in this particular association.

    When I told Garth Nicolson and his microbiologist Dr Gan about this substance back in 1999, he was amazed, for he had just heard similar reports that patients in Europe had just identified their own similar reactivity.

    Regarding whether or not Tahoe was the "Original CFS outbreak".
    There was no "CFS" syndrome until our incident.
    That makes all mentions of "CFS", whether you wish it or not… a comparison against this dataset.

    Prior to Dr Cheney and Dr Petersons outbreak, the only medical entity in the CDC's literature that approximated that illness-entity was Dubois/Straus/Jones paradigm of "a chronic mononucleosis-like syndrome"
    EBV has a long incubation period that makes large clusters of illness highly improbable.
    The Straus/Jones "CEBV Syndrome" was predicated upon an illness that lacked the capacity to create such groupings.
    When the Tahoe group utterly defied the limitations of CEBV Syndrome, Dr Peterson called the CDC for clarification.
    The CDC refused to respond, as they were in agreement that our group could not possibly be the same thing.
    When Dr Peterson persisted, the CDC entertained the possibility that this was an "EBV Variant", a possible rogue strain of EBV.
    Gary Holmes said that if this were true, "It would rewrite the book on EBV".
    That is when Kaplan and Holmes agreed to investigate in 1985, to look for this proposed Rogue-EBV.
    When they found no evidence for it, they left, intending no further study.
    But our illness didn't disappear.
    A year went by. The CDC still refused to investigate. A new virus, "HBLV" was discovered.
    This drew them out of their cage.
    The outbreak became harder to ignore, as it had made headlines again and again.
    Dr Cheney and Dr Peterson had amassed considerable evidence that made the disease impossible to dismiss.
    In 1987, the CDC met to consider what to do about the "Raggedy Ann Disease".
    After that meeting Carlos Lopez announced that elements were being collected for a new syndrome to address this illness.
    "The chronic fatigue syndrome"

    CFS was based on our cohort.
    If you want to know Infectious Venulitis is, you look to the Mercy Hospital group.
    When Tapanui Flu is the subject, you ask someone from New Zealand.
    For ME, you go ask a survivor of the Royal Free incident, as they are not all dead yet.

    But if you want to talk about "CFS", you talk to the group this syndrome was based on.
    You talk to us!

  28. >http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
    A Brief History of Myalgic Encephalomyelitis and an Irreverent
    History of Chronic Fatigue Syndrome
    As presented at the London Conference of May 12, 2006 by Byron Hyde
    Many of the M.E. epidemics started out among children or students.
    This occurred in the 1936 Fond du Lac epidemic, the 1946 to 1949
    Akureyri epidemics, the 1950 St Joseph Infirmary epidemic, the 1952
    Middlesex epidemic, the 1955 Cumbria Street Children’s Hospital. It
    was not then surprising, that the Incline Village epidemic should also
    start among students.
    The Lake Tahoe Epidemic
    The Lake Tahoe epidemic that started in August 1984 also started
    among students. In this case the epidemic began in a high school
    girls basketball team that was travelling in a bus to play various
    other teams. The epidemic spread rapidly with an incubation period
    of approximately a week. As in many of the other epidemics, it then
    spread to the general community. After the epidemic started it then
    involved three high schools, both students and teachers and
    ultimately spread to the community. For some reason it was
    considered to be an epidemic of infectious mononucleosis. This is an
    illness caused by a virus Epstein Barr Syndrome. Associating the
    Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous
    and you will see why almost immediately.
    Dr Paul Cheney and Dr Daniel Peterson were inundated by the number of
    rapidly developing cases of seriously ill patients and called for the
    Centre for Disease Control (CDC) in Atlanta for back up. Initially
    CDC did not appear to (be) very interested. Members of Congress were
    then called and CDC jumped to investigate. According to one of the
    principals who related the story to me, a crew headed by Dr Gary
    Holmes from CDC came out ot Incline Village from Atlanta, drew blood
    samples from the ill patients and spent much of the short remaining
    time in Lake Tahoe playing golf. It is possible that the CDC crew
    would have done a much more thorough investigation but they did not
    and this may have been due to the political forces that gathered
    Business Comes First
    Reputedly, members of the business community whose commercial
    interests depended upon tourist trade and the seasonal ski business
    did not want news hitting television and other media that there was a
    devastating infectious disease running around Lake Tahoe. It would
    have cost the business community millions of dollars. Accordingly, I
    was told that pressure was then placed upon the congressmen to stop
    CDC from investigating this epidemic further or they would lose their
    jobs. And apparently, so it came to pass. There was little further
    investigation except for the sustained efforts of Dr Paul Cheney and
    Dr Daniel Peterson. Reputedly, increasing negative pressure and
    threats were placed upon both of these physicians, sufficiently so
    that Dr Cheney eventually moved his family to South Carolina.
    First International Symposium on Immunology and Pathogenesis of
    Persistent Virus Infections.
    Fast-forward to April 1987 and the First International Symposium on
    Immunology of Persistent Virus Infections held in Atlanta Georgia.
    This was a symposium hosted by the CDC and Dr Carlos Lopez. At this
    meeting Dr Gary Holms gave out his new paper, “A cluster of patients
    with a chronic mononucleosis like syndrome,” that had just been
    published in JAMA. (See Holmes, Kaplan, Stewart et al: JAMA 1987:

  29. >The publication essentially stated that Epstein Barr Virus was not
    the apparent cause of this illness in the 130 patients from which
    they took blood samples. But they weren’t sure and suggested that
    further study be done. Stephen Straus who was apparently the NIH
    chief behind the Lake Tahoe investigation was sitting beside me at
    this symposium. When Dr Holmes gave both Dr Straus and myself the
    paper, Dr Straus in a monolog to him reacted very negatively, stating
    that the patients had tricked him. I was amazed.

    "The god damned patients tricked me. I'm ruined. What will my colleagues think?"
    -Stephen Straus


    THAT, is how "CFS" began!

  30. >Sorry to have bothered people.

    I had thought they would want to know.

  31. >Thanks Erik. I want to know. Whatever the truth is, that's what I want to know. No matter what.

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