The Next Step

The discussion generated by my implicit assumption that Dr. Vernon is guilty by association is defensible in my opinion when the said associate seems to be guilty of crimes against humanity. It sickens me that ME/CFS/X+ patients have to argue about whether their friends are really their friends or not. If we have to wonder, the response is inadequate for the emergency at hand. Pretty clearly our national representatives aren’t going to save us, especially if they are in bed with the people who have been running the concentration camp in which we are imprisoned. Moderate statements about how we are in fact sick shouldn’t placate us any longer, even if backed by a few papers, never designed to impact the treatment of the disease. I’m not really interested in being balanced at this point. I’m mad as hell and I’m not going to take it anymore. ACT UP (links to ACT UP NY and ACT UP civil disobedience manual) seems a better model to me than any moderate approach at this late date.

In response to the post in which I mentioned psychiatric care in the UK, I received this email from one of my penpals there. I am including it with permission:

I was sitting here thinking of all the bad times in the hospital.
…some things included pouring water on my face while I was asleep, tipping my bed up so I fell out. Using tape to tie me to a chair and laughing at me. I was so weak I couldn’t get out the chair.  Taking me for runs everyday. Not letting me rest.
Only allowed to see mum once a week for an hour.  I was only 15 and was allowed  only one phone call a week to anyone.
I also stopped eating and drinking. In the end, I kept managing to run away- climbed out of windows. But they found me. Self harmed because I wanted to die. so had to be watched 24 hours a day and put to sleep with medicine. One time my mum visited me at the hospital and said to me I’m calling the police we are getting you out of here. They are killing you. But the doctors said no.
I escaped and broke a window one time and got quite far. I was so weak and ill. I lay at the side of the road and cars stopped and people crowded round. I thought they would save me. But then someone from the hospital came along in their car and took me straight back. I was disbelieved about my illness and told I was making it up and pushed to breaking point.

When disbelief can do this, no wonder we put up with anyone who says we are sick. But when top CFS doctors (with HIV and GWI experience no less) are publishing papers telling me I need stress reduction lessons, I’ve had it. Not that therapy isn’t a good idea, if you like it, or exercise, if you can do it, but surely it is an abomination under the circumstances that 5 million pounds was spent to prove that badly. How polarized things have become that we have to waste time refuting or being outraged by such idiocy. The paradigm has changed. It’s the virus stupid. Even a doctor should be able to see it. It’s an AIDS-like illness. Infection, inflammation, immunodeficiency. Just because it doesn’t overwhelm the host like HIV doesn’t mean we should throw out everything that’s been learned in that disease. Now we even have a primate model. Not that we should have needed monkeys to prove it when we have millions of human beings freely sharing their by now many viruses. But the macaques show what the so-called Center For Disease Control should have figured out in 1991, when Elaine De Freitas published her paper:
Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. DeFreitas

Just because the disease has obvious psychiatric manifestations doesn’t mean that it is psychosocial in origin. The brain gets sick just like every other organ and when it does, there is content. In the case of X related disease it would appear that it can look like what psychiatrists call PTSD, OCD/PANDAS, bipolar disorder (in adults and children), various anxiety disorders and/or intractable depression. Nobody should understand better than a psychiatrist that inflammation in the brain, even if cortisol/catecholamine induced, doesn’t indicate a weakness or a need to be judged, but sadly psychiatrists seem pretty much universally useless when it comes to this disease, except as a conduit to drugs of limited efficacy or worse. I guess I shouldn’t single them out as all specialties have been equally bereft, but in their case, the perpetuation of their erroneous beliefs has played into the needs of evil elements and thus has been devastating to an enormous number of people. It’s not just that millions of sick people have been discounted, left to suffer in isolation, but an obviously infectious disease has been allowed to spread unchecked through the human population for decades.

With the publication of the Onlamoon/Villinger paper Infection, viral dissemination and antibody responses of Rhesus macaques exposed to the human gammaretrovirus XMRV, it becomes unconscionable to allow the detection difficulties to obscure what is obviously a threat to the health of the species. From the discussion section of this hugely important paper:

The discovery of XMRV raises important questions about its potential as a human pathogen in light of established links of the MLVs from which it is likely derived, to immunosuppression, neurological disorders, and cancers in mice, and established etiologic roles for similar diseases by the retroviruses HIV and HTLV in humans. We reasoned that nonhuman primates would constitute a model close to man with a comparable immune system, and this study is the first to report on the blood-borne infectivity, dissemination, and persistence of XMRV in animals known to express its natural functional receptor, XPR1. XMRV was not only infectious for rhesus macaques, but our results demonstrate that after intravenous injection, XMRV established a persistently replicative infection in select tissues and organs, even though circulation of free virus or infected cells outside of the acute infection period appeared minimal or below detection limits in these healthy animals. It remains possible though, that individuals with lowered immune functions such as RNASEL dysfunction may be more permissive for generalized infection and ongoing virus replication in tissues such as prostate, pancreas and blood. Of note, XMRV appeared to respond to immune activation, since low viremia (2040 vRNA/ml) was detected in the plasma of one of the 2 monkeys administered XMRV proteins adjuvanted with incomplete Freund’s adjuvant on the day of sacrifice. The rapid resolution of the acute viremia suggests that innate mechanisms may largely contribute in containing the virus in the circulation.

It is time for us to stop whining about the decades of neglect and abuse. We need to suck it up somehow and use what we are learning that finally provides some answers. Knowing is still everything for me, though it hasn’t resulted in wellness for myself or my daughter, at least not yet. If wisdom comes from suffering, as a group, we are wise indeed. Far from how we are portrayed, as defeated by lethargy, we have demonstrated a toughness of spirit just to be here still. We need to tap into that collective strength.

Doctors, healthcare workers and their families appear to be disproportionately represented in the patient group. I received a FaceBook message from Gisli in Iceland last night: 

I was reading your blog and the following did cross my mind: Since many doctors have CFS/ME . . I think a group called: –> Doctors with ME/CFS <– could give official international statements about the nature of the disease to other doctors and professionals. Designed as peer2peer (fx. official-statement-website advertised in academic publications ) and themed in a similar human-rights-watch manner as Amnesty International does (+ the peer2peer candid factor), I think it could do good things (perhaps on a bi-annual basis or similar). Some doctors, somewhere, might be interested. The situation is phenomenal and the gulf between doctors and patients is a human rights issue. 

I love this idea. Any doctors and nurses who want to work on this?

And enjoy:
Network – I’m As Mad As Hell!

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37 thoughts on “The Next Step

  1. >"Any doctors and nurses who want to work on this?"

    I think such a group would be more effective if it were restricted to doctors. I don't mean to offend nurses–I was a nurse–but I think it would be better if nurses formed their own group.

  2. >Thank you Jaime for another excellent article. I cannot believe what the authorities in the UK are allowing to happen. It is barbaric in the extreme. We are so close to finally breaking this wall of ignorance, that no one should now need worry about standing up for their human rights. We can do it, if we do it as a group. I'm not referring to unity. I mean gung-ho in their face action at is most compelling. Stating what you want and not accepting less. Whatever that is for the individual.

  3. >Hi Jamie,

    I think the doctors Speak Out, Act Up group would be fantastic idea.

    I like your permission to repost the statement from you friend in the Uk ?

    And here another tragedy about a young mother mistreated in a psychiatric hospital.

    ME / CFS death by psycho-pharmaca ?

    We received the terrible news of the suicide of a 36-year ME / CFS patient who died after 5 years of agonizing disease caused by an overdose of drugs. Her ignorant parents urged her to seek treatment in a psychiatric facility and she was treated with various psychopharmaceutical drugs, whicht aggravated her condition. The young woman leaves behind a 7 year old daughter just before Christmas.

    Warning: We would like to take this event as an opportunity to point out that ME/CFS patients have a significant intolerance to alcohol, anesthesia and chemical drugs. Considering that many health care professional still believe ME/CFS is a psycho-somatic disorder, many are wrongfully treated with psychopharmaca drugs which can cause severe worsening of the desease.

    How many more have to be mistreated and die before those who do this are held accountable ?

  4. >Given how ill my children and I are, given that we had zero safety-net, there have been times I felt so fortunate to have a bathtub and hot water, a roof and walls, food and clothing.

    But we are not fortunate. The kid we know who got a very curable form of cancer and was fine within two months? He's fortunate. Fortunate all the way to donations of money and fun times with Make-A-Wish and feeling great later while all say he's a hero and fine, yes, every cancer survivor is a hero but meanwhile we rot for years, ignored if we're lucky, mistreated if we are treated at all.

    Yes, I'm mad as hell. We even know where to direct the anger: you pinpointed recently who's at the top creating the policy and putting the mid-level puppets in place.

    The question is, what to do? What action can we, so ill, take?

    My friend and I, seeking a way to take action a la AIDS Quilt, created but we haven't the energy to make even that soft and engaging project fly. And maybe socks are too soft anyway. Maybe we need to get out our sabots. But we're too weak to sabotage, in too much pain and too overwhelmed with medical appointments and disability paperwork and even confronting just the regular work of life from dishes to bills—paying bills with fog brain, oh gods—to overwhelmed with it all to throw a spanner in anyone's works.

    We all know action is warranted and long overdue but what action, and how?

    Thanks for a rousing blog.

  5. >Great blog. Our human rights are being violated especially in the UK. This is a life and death struggle and has to be treated as such by our those representing patients.
    ME and CFS can and often is a death sentence. Anyone who claims otherwise is candy coating reality.

    Keith Baker ME 24 years
    Brother ME 24 years
    Mother ME 24 years
    Sister ME 24 years
    2 children both PDD-NOS

  6. >Guilty by Association?

    This feels more like a "Sleeping with the Enemy" scenario. I will not name names.

    It is time for political action.

    I do not see any way around this.

    Julia & Blake

  7. >This is a very timely post! Those in the UK are suffering horribly and some in the US are not far behind.

    Two weeks ago, I was fed up with my PCP. I have had FM since 1992 and CFS since 2006.

    I've worked in healthcare for 30+ years in a clinical laboratory and healthcare IT. My doctor, despite being board certified in internal medicine and infectious diseases, has believed FM and ME/CFS to be "stress related"…. until probably my last visit. His theory was that people dealt with stress differently and for some it resulted in heart disease, others fatigue, others back pain, etc.

    For the first time, his nurse (who suffers from Chronic Lyme) said I appeared very angry. It was true. I've had it. No point in wasting words but he had it coming.

    I gave the example of H. pylori and ulcers. Ulcers were once attributed to stress and it took extreme measure by a physician to convince his peers that H. pylori was the culprit.

    My doctor expressed for the first time the consequences of acknowledging and treating FM/ME/CFS. I am not one to "dance" with words. I was very outspoken regarding what I have been dealing with.

    When I showed him Dr. Bell's book about Cellular Hypoxia, it was the first time I think my doc took me seriously regarding FM/ME/CFS. I go to him for very little. He's not stupid but he's stubborn.

    So am I. I've been sending him LOTS of information. I'm not very patient with arrogant or ignorant physicians when it comes to my family's health and I've now gone to war for my own health and whatever future I can have.

    It's a shame I wasn't as aggressive regarding my own health in the past. I've paid dearly and declined rapidly due to my upbringing of thinking of others before yourself and having a strong work ethic.

    In today's workplace, those who work, can and will be taken advantage of if they allow it. I will not allow it any longer.

    I'm using every day to educate people to the reality of medicine,the politics of research and funding, and the errors of the CDC.

    The time is up for the CDC. Reeves and Unger need to go. The impact of the 2009 discovery of the Whittemore Peterson Institute has totally disrupted many scientists' future funding. This has been a game changer. Who knew the ramifications and that nasty politics would surface after such an incredible finding.

    I'm sure there were other research favorites before HIV. Now there is a new retrovirus in town and it's impact may spread far beyond narrow patient profiles. With ME/CFS, GWI, Fibromyalgia, Atypical MS, Autism, Prostate Cancer, Breast Cancer all represented… much more research is warranted.

    My question is why is the media not picking this up? Who is pulling the media's strings?

    Just some things to think about… ~ JT

  8. >I am fortunate to have had an easy way to tell friend or foe right from the start.

    "I am an Incline Village survivor who was part of the inception of CFS and have something to say about it"

    Willingness to listen: "Friend"
    Turn around and walk away: "FO Enemy!"

    I don't give a damn who it is.
    It is their disdain for the facts that makes them who and what they are.

  9. >As always, you speak with a clear voice and you say, honestly, what needs most to be said. We are tough, and we are not lazy whiners. Many of us are disgusted with the "inside voices" used by the people who say they are our advocates, and we want something actually accomplished rather than platitudes.

    Obviously we need to be rescued, but the people we thought would rescue us are trying to bury us. We are going to have to rescue ourselves.

    Patricia Carter
    XMRV+, 24 years M.E.

  10. >I volunteered heavily for Amnesty International decades ago. I wasn't political in the least. Defending human rights just seemed like the obvious right thing to do to me. Why would anybody not?

    Where are they when we need them?

    Samuel Wales

  11. >i know people have said this before, but i feel the same way: i'd gladly give up this life to act up now. i've so had it. i think the doctor's group is brilliant, and the nurse's too. and i agree with sitagange above: this IS your best blog yet. you're so good at rallying the troops! captain oh my captain, i'm ready… 15 yrs. ~lt

  12. >This blog speaks the absolute truth. ME for 4 years, XMRV+, a child with mild autism and mild learning difficulties,a teaching career lost.I always knew this illness had a serious cause and it didn't surprise me in the least when it was liked to a retrovirus and I knew that I would test positive for XMRV.
    I am dying slowly of a retrovirus that has infected one of my three children and possibly the other two and my husband.
    Dying of ignorance in modern day Britain. When the government in the UK wanted to publicise HIV in the 80's, they ran an advertising campaign with the tag line 'don't die of ignorance' – how ironic – how VERY IRONIC !!

  13. >Jamie, i agree with your assessment. We lay down our life to make something happen? I can't die yet… my whole family is sick with this damn virus. i just need to get treatments; don't we all? Need a doctor to prescribe meds, or it's over. Barbaric system.

  14. >Thank you, thank you, thank you for putting into clear words what I have been trying to relate to a Canadian ME/CFS organization and on ME blogs. There is a paradigm shift in scientific knowledge about ME and brain disorders more generally, so the psychological babble for ME is insulting. So too is the passive and overt support for it by established ME/CFS organizations and some scientists. My own criticisms are not meant to diminish the benefits of physician supervised exercise or psychological support, but attention on these in research, the media, and through institutional policy at this point in history is negligent and criminal. We are at a point in science where we are closing in on preventative approaches… understanding causes of ME, so we can get to primary therapies for patients. Anything less I am not interested in supporting, since it is a violation of my right to health. I am open to any and all research that focuses on looking at mechanisms that will help me get treatment for ME expediently. I am way beyond limiting myself to mere coping strategies. I have done these for 15 years with limited success.

    Science for neurological based illness and neuropsychiatric disease like Alzheimer's and schizophrenia has turned a major corner in the 21st century. Since the mapping of the human genome, geneticists have discovered endogenous retroviruses make up a part of the genome and may play a role in disorders like aids, cancer, MS, Alzheimer's and schizophrenia among others. In modernity we are beginning to understand disease in terms of epigenetics, that is, how human cells interface with the environment (which includes exogenous viruses and retroviruses)to transform genes and create disease. I am involved in research trying to understand endogenous retroviruses and potential genetic pathways in ME and schizophrenia.

    In the face of where science is located in the study of disease it is time to put to rest debates and defending the honour of ME/CFS personalties and start coming up with an 'action plan' for supporting ME research and treatment that embraces multiple elements of 21 century science. I will put the weight of my support for any group that develops a mandate that includes this. Anyone who does not focus on prevention of ME, I will not support plain and simple. For me this stand is a matter of survival and the preservation of my human dignity and right.

  15. >I'm glad to see you did not let the CAA flack Cort Johnson suppress you like he has tried to with so many others.

  16. >Hi Jamie,
    Your critique of the psychiatric profession is good and certainly appropriate. It has done great harm. I would add that in my experiences reporting on this in the 1980s and on, it was medical doctors, bench researchers and even epidemiologists who tried to play psychiatrists, a la Reeves, who did the most harm in this country. In 1986, one of my first interviews at the Centers for Disease Control was with a highly respected (among his CDC colleagues) epidemiologist. He was the supervisor responsible for sending two EIS officers to Incline Village, and we all know how that turned out. It was clearly his opinion that the disease in Nevada and elsewhere was not a disease but a manifestation of hysteria and/or depression in women. In the coming years, he would insist that questionnaires for patients include queries about their bedwetting habits as very young children. He wanted patients to be given Rorschach (inkblot) tests, until someone on the staff made the case to him that such tests hadn't been admissable in court for decades because they were considered so unreliable. He made a strong personal and professional connection with Peter Manu, another MD, in Connecticut, who held sway for a while with his own theories about cfs/me being a manifestation of mental illness. Then there's Stephen Straus, a research clinician, with no training in psychiatry. Walter Gunn, at CDC, who was principal investigator for a while, blew the whistle on his colleagues when he realized they were siphoning millions of dollars away from CFS research. He was a Ph.D. psychologist who once said to me, "Maybe it takes a psychologist to realize these people aren't crazy." One might say, very broadly, that in the UK, bona fide shrinks have won the day (thus far); in the US, since the middle-1980s, the harm has come from a long line of non-shrinks or shrink-wannabes, who abdicated their professional mandates and their entire body of training, to become pretend shrinks.

  17. >I guess you are moderating posts and removed my earlier comment. Let me state now simply I am mad and ready to move on in research.

  18. >What an amazing post! thank you so much. The passage from the young patient was very powerful. These testomonies of abuse can rally us.

    Please doctors and health care workers, organize, educate and speak out!!!

    We need to move on to the next step- ratcheting up the pressure on Congress and HHS with publicity and protests!!! These are human rights abuses! No more crumbs!

  19. >Your UK young person's experience points up why TIME IS OF THE ESSENCE in establishing the biomedical facts as widely as possible. The push is on in the US, and has been for many years, to have CFS firmly established as mental illness.

    Approximately half the committee established to update the DSM, the diagnistic bible of psychiatry/psychology, this year, is in favor of calling ME/CFS a "medically unexplained" illness and including it as, or inferring it to be, a psychosomatic illness.

    Disability insurers and Medicare, as well as SSA, already use the statements posted on the CDCs website saying there are no biomarkers, no tests, no treatments established for CFS, ("all is experimental")so they don't have to test, pay for tests or treat CFS as anything but a mental illness.

    This is why the actions of CAA/Vernon/McCleary and their favorite flack are so seriously threatening. If they can delay or sabotage the biomedical evidence long enough, they can make it go away again, possbily permanently. If we should get national health care in the US, imagine it being created in the image of NHS in UK where the official government policy is not to test or treat for neuroimmune symptoms. See my blog for a view complimentary to what you have stated here and with which I fully agree.

  20. >a gentle reminder to all:

    ACTING UP in a group way would be great. and we should do it — need to do it!

    but in the mean time, until we can organize that, ACTING UP does not have to be a group effort and it is not as hard and difficult as you may think (for those who are not bedridden).

    it can be one person with a sign standing in front of your local hospital, gov't office, red cross building or the Wash DC HHS (Health and Human Services) headquarters. it can be one person with a sign at wherever NIH's director, Dr. Collins, is publicly speaking that week.

    getting media there would help, of course. but if not, drag a friend and have her shoot it to post on YouTube. then email it to the media.

    the below videos are related to my own M.E. and Chronic Fatigue Syndrome (ME/CFS) activism.
    (5 min serious video of my one-women protest in front of Health and Human Services and Red Cross Nat'l Headquarters.)
    (5 min comedic singing bedroom video, with me and my family)
    (5 min comedic video pressuring the Red Cross to ban ME/CFS blood donations. the resulting campaign, coupled with the actions of other individuals and groups, was a success! within days, the Red Cross came out with a press release stating they were banning folks with ME/CFS from donating blood)

    rivka (at) ThatTakesOvaries (dot) org

  21. >Great post Jamie.

    That letter from the guy in the UK seems almost unreal…waterboarding would've been less cruel. I don't understand however why his own mother can't take him home. She's his parent, not those sadistic doctors.

    I do wish however that Anonymous at 7:15 would stop the Cort bashing. It's just soooo tired. How in the world has Cort suppressed Jamie, or anyone else? Sheesh.

  22. >I am a physician with ME/CFS and know two other doctors with it that are unrelated to me. I don't know where you want to go with this but there used to be a "Medical Professionals with ME/CFS" group which might know of. I am not a member of this group but have heard of it. Back a few decades ago, when the APA decided not to classify homosexuality as a psychological disorder any longer, part of the reason why were gay APA members who worked behind the scenes to make it happen.

  23. >@Anonymous Dr~ Yes, the "Med. Profs w/ME/CFS" is starting up again, but most have been very sick and there are NO Dr's IN it YET.. we do have a Group on FB. If I knew how to reach you I would invite you. All of the old records have been archived and we are hoping to get a new website soon. You can Tweet me if you are interested, OK ?

    Thank You, Jamie for saying what many of us have felt. And as Usual Gisli is usually "Right ON the money" again…

    As someone that worked in a hospital for 17yrs then got sick and my body quit working, have had EBV but my Titer was low after my Triggering Event, and after going to the same Medical Practice for the past 12 years, as Dr Judy knows, they did NOT even have the medical knowledge to give me the proper tests results when I called them. I was tested by VipDx and tested SeroPositive for antibodies for XMRV but when I called my Drs office they told me I did not have it, even tho I also had my hardcopy and could SEE the BIG BRIGHT RED Positive. Like you say, we may be physically ill but we are NOT Dumb and we are STRONG to have lived and fought this long.. for me now bedridden with OI/POTS after 24 yrs, I can not even find any Dr to help me locally. Maybe I am Wrong, but I have NEVER heard of ANY Retrovirus to Cause HEALTH… in addition my mother died from Lymphoma so this is hitting even closer to home. Having been my hospital Health + Safety Com. Rep that went to all of the AIDS Conf. in SF in the mid 80's, this IS Ringing ALL TOO Familiar.. but what are we to do if we can NOT even get Rx'd for meds to help us while they give away AIDS cocktails FREE in Africa ? Somebody is Definitely NOT Lobbying for US. I would LOVE to work again and be able to pay taxes.
    Like another friend says, "If you can't Help someone at Least do NOT Hurt them." What ever happen to the Hippocratic Oath ? Do Dr's NOT take that any more ? I am not Depressed but THIS SITUATION is getting Very Depressing… YES> The Band IS Playing ON, the Blood Supply is Contaminated, Our illness alone is causing our country's economy $20 Billion a year, yet we can NOT even get Help with meds after we test Positive for a Retrovirus from our own Dr's ?? For gosh sakes, I even took Latin in high school and know how to use a medical dictionary to look up "retrovirus." The system is BAD all the way from the Top to the bottom..and that includes those that work to cover this pandemic up…YES, those in bed with the Insurance and Psych lobby also. Heck YES, it is way Past time to start ACTing UP. Cull out the dead wood and and right now, YES, it is 2 things.. that effect each other.. "It's the Economy Stupid" AND "It's the RetroVirus Stupid." Help the latter around the world and you will Help the former around the world. PERIOD. I will be in touch~ Bless you !!

  24. >Thanks for standing up and telling it like it is.

    IN order to make progress in the fight for our lives… We all need to realize the unfortunate reality HGRV'ers all face. This is real, and we aren;t getting help from governments to cure it.

    Also need to understand the propaganda coming from the CDC, newspapers, and UK is a dsitraction and highlights the need for more concrete action to force change in governments.


  25. >More and more of us are so fired up – it is wonderful to see. Thanks, CAA, for setting in motion what I hope will be a major organized resistance to the crap we've suffered under for too long. I love social networking! I posted the awful quotes given by McCleary and Vernon on my blog, and made sure I spread that as far as I could. Because I couldn't get my friends to join XMRV Global Action on facebook (definitely join it if you're afflicted) I've taken to posting things on my fb that my 300+ friends can easily do in a moment or so, like emails and petitions. I, too, was active in Amnesty in the 80s and 90s (and I'm bedridden now). We may not be political prisoners, but we are prisoners just the same! Act up! Now all we need is a good acronym…


  26. >I haven’t looked at the Act Up website, but yesterday I read excerpts from AIDS activist Larry Kramer’s 2007 speech posted by Mindy Kitei in her blog on February 6 2011 (titled "We Are Not Crumbs": An Editorial).

    Kramer’s speech is stirring. But there is a key difference between HIV/AIDS activists who were so effective 25 years ago and the current situation for ME/CFS. AIDS is a specific entity and its symptoms are consistent, e.g. body wasting. Without effective treatment AIDS was devastating. Kramer: “One day AIDS came along. It happened fast. Almost every man I was friendly with died.”
    The gay community very effectively united to advocate for research and treatment. (If statements in Kramer’s speech are correct we all have benefited from their activism, “We redesigned the whole system of clinical trials that is in use to this day for every major illness. And, of course, we got those drugs out. And the FDA approval for a new drug that once took an average of 7-12 years can now be had in less than one. ACT UP did all this.” … “Dr. Fauci [the director of infectious diseases at NIH] now tells the world that modern medicine can be divided into two periods. Before us and after us. 'ACT UP put medicine back in the hands of the patients, which is where it belongs ….”)
    However, the HIV/AIDS activists were united around a specific disease entity rather than a somewhat vague syndrome. (Yes, the word “syndrome” is the “S” in “AIDS” but, even before identification of HIV as the causative agent, AIDS is a more distinctly unique disorder than ME/CFS currently is.)
    I expect a number of outbreaks of ME/CFS (such as the Lake Tahoe outbreak) were unique disorders, but these outbreaks were so small that they became incorporated into the syndromic* classification, ME/CFS.

    Large-scale activism is problematic in a community that embraces all-comers. For instance, I don’t want to associate in any way with Patient X’s story of recovery from ME, or with those who promulgate that Lightning Process cures ME/CFS, and all manner of other bizarre cures. But others in our heterogeneous community embrace these methods.

    I don’t think we can unite effectively in activism until our conditions are better defined. With better definition we separate into distinct groups and then we campaign passionately for OUR cause (whichever, “OUR” we belong to).
    Patient X recovered with the treatment he received (even though I think it is a bizarre treatment) and I presume those who claim to have recovered using Lightning Process were unwell and recovered. I don’t know whether a qualified medico has diagnosed any person who promulgates LP as a cure for ME/CFS, but apparently ME/CFS specialist physicians diagnosed Patient X with ME.

    At the moment some members of the ME/CFS community spend an extraordinary amount of time and energy debunking (IMHO) BS promulgated on sites that act for ME/CFS; look at the effort Suzy Chapman and others put into debunking LP on not one but two threads at PR (why PR ran two threads perplexes me).
    Imagine how much advocacy and activism Suzy and others can achieve when wagons are circled and they don’t constantly need to deflect friendly fire.
    * See my next comment.

  27. >@ Jayne..Please never ever put my name and treatment methods I recieved in the same sentence as the LP. They are completely different treatments. I am not a fan of the LP neither and it may be harmful in my opionion, but thats my opinion. Instead of worrying about who has what and by the way I have the truest form of neurological ME, as diagnosed by Peterson and others( And I really hope you never experience the level I was at)…focus on advocacy on a governmental level as most of our bickering has been derived from being misled by the CDC/NIH, including misled doctors recieving the same false information….in turn there is very poor treatment options and lack of support for those with CFS.

    As far as anti-retrovirals, well if you get better from them than great for you..if your poor little mitos get poisoned than sorry to hear as well. Anti-viral nor any other tx will be a cure all unfortunately. I beleive the best route and future of treating ME will only be with Immune Modulators, which includes natural immune shifting remedies that have worked for me as well as bringing homeostasis back by treating the nervous system as well. Peace

    Mike Dessin

  28. >@Mike~ I did not read the article mentioned, but IMHO your comment "As far as anti-retrovirals, well if you get better from them than great for you..if your poor little mitos get poisoned than sorry to hear as well." was rather ill-spirited and not in good taste.

    If YOU had tested POSITIVE for a Retrovirus it is my opinion that you ALSO would pursue whatever you needed to.. to help yourself..

    For MANY now it is not only a case of ME/CFS but ALSO with a retrovirus., Just as AIDS is
    HIV + another opportunistic infection. So for many now it is ME/CFS + XMRV, or Lyme + XMRV, then possibly leading to Lymphoma, Breast Cancer or other diseases…

    NO One has stated that any ONE drug will be a CURE. ALL of these different diseases or viruses need to be addressed separately.. Treating ME/CFS alone will NOT cure a retrovirus that is IN your DNA, just as it will not cure HIV.

    Please "Walk Your OWN Talk" and Do NOT be "thoughtless and belittling" when speaking to another…. no matter what their Invisible Illness.
    Not even meds can cure lack of proper etiquette or behavior.

    @Joyce~ I don't know you or your blog… but for many of us that lived thru the days of HIV and had many friends die and many live because they eventually WERE able to take ARVs ~ those NOW with ANY of the Invisible Illnesses PLUS XMRV "DO HAVE a Unifying Theme." Those of us with XMRV and another Invisible Illness HAVE "Devastating Illnesses" and How dare YOU say otherwise.. SHAME on YOU. I personally know people that not only do they have it, but their children do also and many may not make it thru this next year without treatment. We also DO have an UNITED History of being Invisible because of the CDC's refusal to take this illness HEAD-ON and it finally took a single Family to ACT UP and start a Insitute and dedicate their lives to helping us..
    Even Dr. Cheney in the beginning when he scanned the brains of his first patients was tolds they had brain lesions like HIV/AIDS patients.. and we have other BioMarkers and Positive tests also from other Secondary infections just like those with HIV get only we are not allowed YET for the most part to take their meds. Many of us FEEL like we have "AIDS 2.0" and are being discriminated just like the Original HIV/AIDS folks in fact the incline Village folks were discriminated against and shamed in their own town also. So do NOT TELL US WE DO NOT HAVE ANY UNIFYING CHARACTERISTIC. When you talk like THAT you sound like the CAA and the CDC.

    AIDS 2.0 are you Ready to ACT UP ???

  29. >Jamie said “Just because the disease has obvious psychiatric manifestations doesn't mean that it is psychosocial in origin.”

    When CFS robs a person of bodily integrity, financial security, interpersonal relationships, and career, emotional fallout is normal. Severely ill people can't afford the luxury of denial. This hasn’t prevented many “experts” from luxuriating in the denial that fosters ridiculous theories about etiology (psychosocial) and treatment (cognitive behavioral therapy).

    Such self-regard amounts not only to denial, but to narcissism. What else explains the reckless disregard of decades of information from patients, and now from WPI, in favor of asinine theories that hold no promise? May these experts be expelled from their bath of self-love and into reality, where those of us with CFS know that CBT is better suited for narcissism than CFS.

  30. >dear jamie …great article, thank you !!

    have all of u read "project daylily" by dr garth nicholson ? not the 'best read,'(wrote himself) but…
    'the real deal' behind this story !
    ( i have wondered why dr nicholson, has not teamed up w/ wpi)

    myself….for awhile, say… "class action law suit" !!!
    sick 25 + yrs & "i'm done !!! & mad as hell, & i'm not goin take it"
    count me in !!….but, it must be done with, "One Voice,One Heart"
    Blessing's to all……….

  31. >My only response to the tirade from Anonymous, who declined to put a name to his/her comment, is a quote from my desk calendar, “If two people in a business always agree then one of them isn’t necessary.” (i.e. people are entitled to post thoughts, ideas here without being abused; play nicely.)

    Mike, I didn’t link you with LP (or I didn’t intend my comment to be interpreted that way, and in re-reading it, I don’t think readers of my comment will link you with LP).
    You and I are good examples of the point I make. I too have been diagnosed with ME/CFS by multiple physicians who have good knowledge of ME/CFS (I’m in my 37th year of disability). I have the advantage of knowing quite a lot about your illness and you know nothing about mine (I prefer to maintain my privacy), I apologise for that one-sidedness. I never have been as physically frail as you were, however, I have existed in my invisible prison (as so many of us do) with no chance to establish a life (family, children, career, friends …), so I appreciate the consequences on one’s life of severe disability.

    However, I feel like an imposter in someone else’s syndrome. There is very little about my condition (i.e. its history of onset, most of my symptoms and pathology results) that I can reconcile with yours and a number of others (e.g. Dr Jamie, Patient Advocate’s daughter). However, I know of symptoms I share with some folks (e.g. difficulty with writing, variation in level of fatigue according to phase of menstrual cycle, gut issues).
    I test –ive for every infection (in 37 yrs a lot has been tested for) except evidence of a mild Toxoplasma infection in the past. I was a robustly healthy child (no episodes of tonsillitis, average no. of colds/yr, fewer than normal childhood viral illnesses, ie. contracting measles, mumps rubella, chickenpox was normal when I was child, I contracted only measles and had uneventful and quick recovery from it [I didn’t contract mumps and rubella even though I was exposed to them by friends/sibling]). Not a single inflammatory marker is raised.

    Dr Jamie comments in a previous post that the people who have fared best are those who avoided aggressive treatment protocols imposed by doctors. I put myself mainly in this category. Initially I investigated whether there was psychosomatic origin to my fatigue and for 10 years sought assistance from several psychiatrists (none of whom thought I was depressed). With no causative agent or systemic aberration found it was hard to discount anything, so we tried a succession of antidepressants, alone and in combination with thyroxine and other pharmaceutical agents, in case I had a form of atypical depression. Nothing helped; with hindsight I think my sleep patterns were irreversibly disrupted by that pharmaceutical intervention.

    I moved on to more vigorously pursue discovery of a physical cause and sought out the few physicians in my home state in Australia who had reasonable knowledge of ME/CFS (mostly family doctors who compassionately tried to fill a void).
    It is damning to say that I don’t recall a single one of those physicians giving me a physical examination (but they ordered plenty of pathology tests). To a person they focussed on the label (ME/CFS) and tried to make me fit the available treatments, so a plethora of anti-infective “ X-protocol” treatments were suggested (in spite of the lack of evidence of any infection or inflammation in their patient). Some credit is due; when immunoglobulin treatment was in vogue I was advised not to try it. I declined the X-protocols. I am relatively confident that the protocols would not have helped my condition; it’s impossible to know whether I would be less well today if I had undertaken them. With the current state of scientific knowledge I have no intention of trying ARVs. My choice, I appreciate others feel they have nothing to lose and everything to gain.

    Doctors attribute a single cause too easily (note how Dr Cheney concluded ME/CFS was heart-related after his experience with heart pathology).

  32. >This is "next comment" referred to in my March 2 comment (had probs posting): This 1st page text available at SpringerLink:

    Vol. 123, No. 3, 209-212, DOI: 10.1007/BF02445405
    The Basic Clinical Concepts of Syndrome, Disease Entity, and Disease Group: Biomedical Assessment
    V.V. Serov
    Translated from Byulleten' Eksperimental'noi Biologii i Meditsiny, Vol. 123, No. 3, pp. 244–247, March, 1997
    Original article submitted November 20, 1995

    Text from first page
    Clinical medicine developed from efforts to comprehend syndromes and symptoms to elucidation of causes and essence of diseases. In the 1990’s, profound insights into the delicate mechanisms underlying functional disorders in the body have been gained at the molecular and supramolecular levels. The data collected by molecular biologists, geneticists, and immunologists have made possible both genotypic (nosologic) and phenotypic (syndromic, pathogenic) evaluations of the events occurring in disease. It would seem that the progress achieved by theoretical medicine and biology has afforded clinical medicine a good opportunity to enter the 21th [sic] century with firmly established concepts of syndromology and nosology. Yet this opportunity has not been fully utilized because analytical thinking predominated to the detriment of synthetic thinking whereby generalizations are made, based on consideration of practical data in order to understand the essence and principles of disease processes.

    Consider the concept of syndrome. This concept is far from being interpreted unequivocally, even in reference books. According to the Greater Medical Encyclopedia (Vol. 23, p. 779 [in Russia]), a syndrome is not equivalent to a disease (nosologic) entity, for it may be associated with various diseases.” The Encyclopedic Dictionary of Medical Terms (1984, Vol 3, p.102 [in Russian]) defines syndrome as “the sum of symptoms having a common pathogenesis” and adds that this term may sometimes be used “to designate a nosologic entity.” The “nosologization” of syndromes, as well as the bringing nosologic entities together as a syndrome, represents an attempt to promulgate the syndromologic approach to the evaluation of disease. Thus a World Health Organization (WHO) expert, commenting on the new International Classification of Chronic Hepatitis (1994), wrote that chronic hepatitis is not a clear disease entity but a syndromic concept [11].

    Preoccupation with the syndromic approach is also evident among clinicians in this country. There are textbooks of internal medicine [1] in which the syndromic principle is often replaced by a nosologic one. A question arises: on what grounds the “manifestations of occupational allergy” such as dermatitis, eczema, urticaria, or bronchial asthma are referred to as a “nonspecific syndrome” rather than a disease entity? Another question is why joint lesions occurring in nonspecific ulcerative colitis and Crohn’s disease are not regarded as a manifestation of these diseases, as a “joint syndrome”, but as a “disease entity” in the group of rheumatic diseases?
    For example, in the Vestnik RAMN (Journal of the Russian Academy of Medical Sciences), hypertension, diabetes mellitus, and atherosclerosis are described as clinical manifestations of the metabolic syndrome X [7]. A report at a meeting of the Moscow Therapeutic Society was entitled “Hypertensive Disease as a Syndrome”.

  33. >Hey Jayne thanks for sharing your story and I truly wish you only the very best :)

    As for the anonymous, not worth my time to comment back.

    Mike D

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