Tuesday, March 22, 2011

"What the boys want, dad, is clarity"


One of the positive phenomena of the last few years is the number of clear and strong voices that have emerged in the ME/CFS community. It seems to be ever increasing - whether by blog, comments, articles, or message boards. Each of us has a part to play in this unfolding drama - and it is a healthy sign that this great stirring has happened. (Check out the responses to Amy Marcus's articles.) I attribute this increased "activity" solely to the October 2009 paper from Vincent Lombardi and Judy Mikovits of the Whittemore Peterson Institute. This paper has sharpened and strengthened the voices of the patients with this illness.

These voices strive to bring clarity to a decades-long deliberately scrambled ME/CFS mess. This is going to take a lot of work, to untangle this mess, but I think it is possible if we keep at it collectively.

When I am in Philadelphia, I will meet friends at a local coffee bar. These friends are often ME/CFS patients. We will sit around a table for an hour and have a lively conversation. Occasionally, among those with ME/CFS, there is a moment of cognitive shortcoming, where an individual has difficulty grasping for a word or an idea. While this is usual for someone my age, these people - men and women - are younger, and this abnormal "brain fog" goes with the territory. Otherwise these wonderful friends seem "normal" - lively, engaged and engaging. In this group, the morose introverted artist (me) is the one that looks sick.

I will get up from the table and head out on my bike, doing my errands, The others in the group, those with ME/CFS, will go home and lie down for two days. "Going out", doing anything, takes a big toll on these patients. They also do "preemptive" resting in preparation for a modest social occasion. It is worth pointing out that these are the "well patients". These are the patients that doctors see in their offices, when the patients make their best "presentations". These are the patients who can go to "part of a conference" and then spend a week or two in bed. The face of ME/CFS doesn not reveal itself in public very clearly - and this is a large part of the problem of communicating the true nature of this illness. People at large see these patients - and they "look pretty good". Looks are deceiving.

What can we do about this? If the public face of the very serious illness does not reveal itself (think AIDS , think Parkinson's), how does one present this illness? (It is not sufficient to show a person lying on a couch or dropping dishes.)

And what about the others - what about the really sick ones?

There is really one one way to present this illness, and it needs to be done more often. The face of this illness lies in the presentation of the severely ill patients. This is one of the real values of Laurel's CFSAC video testimony in October 2009. She did us a very great favor to make this video, visually and audibly describing her condition. This courageous and heartrending video that has so much power and dignity. We need to see more of these kinds of videos - images and pictures of the severely disabled. This is where the visual information lies - down near the bottom.

"Walled up":
Imagine a patient who cannot stand, who has extreme fatigue and must live a horizontal life. Imagine a person who is functionally blind from light sensitivity and eye muscle fatigue and wears a blinder 24/7. Imagine how this blindness might further limit this person's ability to move. Imagine this person with sound sensitivity so bad that they have to wear earplugs or sound blocking earguards. Imagine a person whose skin is sore and sensitive to the touch. Imagine a person who cannot focus their thoughts, has short term memory deficit, or can't speak clearly because of neurological deficits ("brain fog"). Imagine a person who has seizures, spasms and twitches. Imagine a person who has lost their sense of smell - or has hypersensitivity to smells. Imagine a person who cannot speak, or cannot speak above a whisper. Imagine a person with a feeding tube, IV medication, and oxygen. Imagine living in a world where things coming in and things going out don't happen. Take a good look. This is ME/CFS at the core. My friends in the UK call it ME. It is worth noting that all other ME/CFS patients are on a continuum, shifting whimsically up or down the scale over the years.

Incidentally these patients have measurable abnormalities that characterize the illness.

Natalie Boulton has also done us a great favor in writing and editing her fine book, Lost Voices, a gathering or set of stories and pictures of severely ill UK ME patients. The book was published by InvestinME in 2008. It gives the clearest picture currently available of this illness, and is the most valuable resource for coming to terms with its reality. Otherwise there are various videos on youtube made by patients, and by the providers of these very sick patients. Many of the older videos that I viewed years ago, ones that were quite frightening, have disappeared off the internet. Soon we will have additional contributions in this area, and they will be welcomed for what they are - clear documents of the core of this ME/CFS illness.

This, of course, is not an easy subject. It is a delicate issue - this severe private illness that takes place in darkened rooms - and from many points of view. But I think we have to have the courage to put pictures and videos - with clear explanations - out into the world in order to show the serious consequences of this illness. This illness needs a face, a real face.

I was in the conference hall in London several years back when Dr. Kenny de Meirleir showed videos of desperately ill, bed bound patients in Norway. The video was extreme, showing a patient lying in a bed in a darkened room, with a feeding tube, wearing a blinder and ear protectors. The sheets were suspended above the patient due to intolerance of the weight and pain of the sheets. It was a riveting, terrifying video, an image straight out of Dante. At the same time, Dr. de Meirleir had a young women speak about her "walled up" sister, who she had not seen in four years, even though they lived in the same house. It was easy to sense that this presentation shocked the audience, an audience consisting of patients or those familiar with the illness. It was as if Dr. de Meirleir had done something inappropriate. But for me, it was a revelation, and that moment has percolated in my mind ever since.

How can this illness be presented to the uninformed - doctors, researchers, journalists, friends and families - in a profound way? I think you have to go "to the core". It is like going inside of the smashed nuclear reactor and viewing the exposed fuel rods.

Certainly, at the moment, the face of this illness has not registered with the public at large, and listing a long list of symptoms is not going to cut it. I want a video in my hand that depicts the "very bottom" - a video that I can hand to Dr. Harvey Alter and say : "Dr. Alter, take a look at this." - and hand it to any number of people with the same intention. There is a need to provoke people into the recognition of the true devastation that this illness inflicts on patients - and caregivers.

My daughter suggests "before and after" video stories. This also could be adapted to written stories. These stories would have to be done on the right patients, ones who can be well documented in a manner that the public will understand. Stories in this arena would most likely lean towards doctors, nurses, lawyers and other professionals whose lives have been shattered. It is my judgment that their stories would be easier to tell and more understandable in the society in which we live. This should not be seen as a value judgment, and I am open to suggestion here.

Confirmation of the power of this "before and after" treatment was driven home to me this past week by satellite pitchers of the vast destruction in Japan. These photos are very powerful and convey in an instant what needs to be applied to this very serious, debilitating illness of ME/CFS.




This is what was, this is what is.


58 comments:

  1. Your best blog yet!

    I have thought of doing a video but I have felt it would be pathetic with me speaking in a whisper, hair a mess, bloated, lymph nodes swollen everywhere. It is not the kind of picture I want to present to the world. My before and after pictures startle me! But perhaps I need to rethink this vanity for the greater good.

    I find it hurtful to look at the picture of me right before I got sick. I find it hurtful to recount much to anyone. It's as though all the things I put in a compartment of my mind for safe storage come tumbling out, overwhelming my soul to the real reality of my situation, instead of my self adjusted reality I have painted in my mind in order to be able to be happy.

    But yes, you have a good point. My vanity will never help bring attention to our plight.

    ReplyDelete
  2. Thank you so much for attempting to articulate this. The sickest patients are never seen or are forgotten. Even those of us with ME/CFS who can be online, who can read or write blogs, can forget that, as sick as we are, we are much more functional and "seen" than many. I appreciate you speaking up for those who cannot speak for themselves. Thank you.

    ReplyDelete
  3. Thank you... and your ideas about what stories might be more easily understood by the public may be on the money. I was an attorney and I received Soc Sec on the appeal. I didn't have to go to a hearing like most. My lawyer believed that my being an attorney made the difference. No one would believe that an attorney capable of making good money would malinger.

    ReplyDelete
  4. Thank you for posting this. It is easy to forget how lucky we (PWC) are, to have at least some kind of "normal" life in comparison to our sicker comrades. I recently found pictures of myself before getting sick and as I was getting sick. I don't think strangers would be able to identify me as the same person. I think you are onto something here with the before and after images...

    ReplyDelete
  5. Chris, I have goosebumps. Amazing blog. I've been so caught up, I keep forgetting to get a picture of me sick with an X for Peggy's Exit Project. Perhaps you'll be the motivation.

    Thank you.

    Karen

    ReplyDelete
  6. Once again, thankyou P.A. for articulating these thoughts.
    It strikes me that the very type of advocacy which would be most effective, is precisely that which the so called "advocacy" organisations around the world have so utterly failed to deliver.

    ReplyDelete
  7. Chris I was one of those patients for literally a dark time in my life . I lived in a bed where my mother and family came to see me in a dark room . I was too sick to walk feed myself, bathe , or brush my own teeth . It was the hardest time of my life . It needs to be talked about one of my deepest regrets is being so ashamed to not be dressed for an interview . I had a woman do my hair and my skin . I didn't want to look sick but I realized after . Thus is the reality . I wanted to be strong like I was fighting it that I have courage that I wasn't letting it wash me away . But it was a lie . The disease robbed me of my life for 18 years . Only now can I look back and wonder how I survived a living he'll. Of pain , seizures, heart problems, vomiting, fighting every cough and flu that my siblings brought home, allergies and horrible infections of my organs. I rarely tell anyone how bad it truly was . I was dying and now slowly very slowly I am coming back to life with treatment for the first time . I don't know what to say except I sympathize so much with the most severe patients . Telling them don't quit or hang on was what I heard all the time and yet I lost all my hope so that's not what I would say. I was in survival mode and my parents saved me . If I were alone like some patients it wouldn't have been possible to survive . The WPI brought me so much hope and faith and hope it does the same .

    ReplyDelete
  8. Thank you so much for this amazing post. I have been ill now for over 20 years, it has changed my life in a very horrible way, no graduations, no weddings, no ballgames, only watching my two beautiful girls grow up from my bedroom. I have felt as if I am only going through the motions of living, not thinking my life could be much worse, until 3 years ago when my 23 year old beautiful healthy daughter also became ill and now lives her life in bed also, not able to take care of her 3 year old daughter, now that is truly living in hell, watching your child go through what you know to be a life without true happiness, only pain, fatigue, illness and unhappiness as you watch your loved ones live your life without you. Thank you so much, I have always told my daughter, Why are they not showing the truly sick people with this illness, the ones who cannot even leave their homes?

    ReplyDelete
  9. It is truly heartbreaking to hear the stories about teens and adults becoming ill - another generation lost. Maybe that would be something that could be portrayed in a video. Thank you, Chris, for all that you do to advocate for us.

    ReplyDelete
  10. Thank you Chris. This is a link to a video made by a mother of a young woman who has had ME since she was 5 years old. This is the first of a 5 day video diary. She lives in the UK and has been abandoned by the medical profession. This is a very upsetting video series to watch but it illustrates how severe this illness is for so many people who are shut away out of the eyes of the public.

    http://www.youtube.com/watch?v=aZsgHKewy5s

    ReplyDelete
  11. That's a wonderful idea, Chris...the before and afters.

    I keep a little, tiny, secret picture of me about 2 years before I got ill in my cabinet, where I primp and put on my moisturizer and stuff. No one knows about that little picture. I just keep it as a hope that one day I'll be able to look and feel that good again.

    ReplyDelete
  12. Nice blog, patient advocate.

    I agree allowing the public to see the sick-looking patient photos might help change the perception of this horrible illness. That was my major criticism of the ill-designed CAA/CDC "Faces" campaign - not one of those people (that I remember) looked ill.

    Speaking as one of those formerly walled-in persons, who still spends her days mostly lying flat, unkempt, often unwashed, sporting fraying tshirts, yoga pants and an eye mask, nestled in heated spa blankets for various sources of pain, and sporting the zombie pallor/dark eye circle combination that would (with some fake blood) qualify me for extra work in the "Dawn of the Dead", I find it difficult to confront the reality of my visual unpleasantness in a photograph. It is yet one more humiliation generated by the horror that is CFS. No matter how many years I am ill, my mind still insists that I am the young woman who showered daily, wore makeup and spent entirely too much time styling my hair. I seem to have the memory of a goldfish: no matter how many photographs of myself I see, it's always surprising to how sick I look.

    Overcoming the strong social impulse to appear at one's most visually pleasant take courage. I applaud the patients who do allow themselves to be seen as they are.

    ReplyDelete
  13. I believe you've hit the nail on the head Chris and reached the heart of the matter. Constantly being portrayed as mostly fatigued perpetuates the indifference towards us. Other than the WPI, there is no sense of urgency towards us. We need details of how ill one can get on this continuum. Yes to before and after! Yes to featuring professionals! Sorry but I can think of no one better to tackle this project than you.

    ReplyDelete
  14. Many thanks as always for your well written blog. I am constantly amazed at the efforts people such as yourself put into advocacy.

    One niggle, why would an attorney or doctor or politician or writer (famous even) be any more believable than someone on $20 k a year? and is it something to be proud of when a judge embraces the 'old boys' network and awards disability to a fellow law professional?

    I am always irked when I read one blogger who manages to put her Phd in at least the second line of any blog. Why should we justify ourselves?

    If I or others earn a pittance, are we more likely to defraud the system?
    To be more corruptible? Not by recent global history certainly.

    I have no desire to hide my face or my illness in case people think that I must be a scammer if I claim illness. I am a 'worker', an honest one and proud of it.

    This is a very curious reversal.

    I know this is a crabby post but it is honest.

    ReplyDelete
  15. Well said. You are absolutely right about the _Science_ article bringing us into the battle again. For so many years, we knew we were ill, but without a possible etiology, fighting for justice and awareness of the disease was a scattershot endeavor. Now we have a focus! It is a wonderful thing. It's the retrovirus, stupid!

    I am one of those "living a horizontal life." I was also one of those in a bed in a dark room for some years - Dr. Cheney has given me a bit of life back. I still have most of the attributes that you use to describe the severely ill, though.

    A compassionate friend who's in journalism school profiled me for an assignment. That was his way of contributing to greater awareness. I would like to see more of that happening. And I'm making an effort to that end, too - I'm able to type enough some days now that I'm blogging again. I'd rather be working on my old food blog, but until I can do things like, oh, let's say, stand up, or go to the farmers' market, this will have to do. I think it's important work, though - I realized that almost nobody, besides intimate friends and family, really knew what my day-to-day life is like. And now they're starting to know.

    Some of the things I've blogged about in regards to the illness have shocked people. I sort of forget how shocking they are, b/c it's just the way life is for me - I've gotten used to how circumscribed my life is. The more of us who speak out about this, the better. Thanks for being a part of that conversation.

    -Jocelyn

    ReplyDelete
  16. I think our best hope to get the true story out lies in "What About ME", the documentary movie currently in production. It has the potential to have a huge impact. Here's the latest teaser: http://www.youtube.com/watch?v=kmnbk4iPYA0.

    Perhaps we should put our support -- financial, promotional, etc. toward this project.

    "What About ME" has a website: http://www.whataboutme.biz/ and is also on Facebook.

    ReplyDelete
  17. Rev. Dr. S.A.WozencraftMarch 23, 2011 at 10:42 AM

    I was a pastor, on-call 24/7 and working an active 60 hour average work-week. Now with FM, I can do 2-3 "things" in a day and one of those "things" is getting dressed and getting breakfast and feeding my cats. If I push past that 2-3 "things" in a day (as I did earlier this week), I spend one or more following days "down" - unable to function, possibly unable to get out of bed. There are physical changes, and I am surprised to see myself in the mirror; it does not look like "me." But the worst is not being able to do what I so desperately want to do. I hate forced retirement, but it is worse that I cannot even keep up "fun" things when "life" things require my energy and attention.

    For HMMC - maybe the reason we mention the doctorate is that we are mourning what we used to do and can no longer do. Also, it is a part of our identity, of who we are. When we have lost our vocation/career, we are holding on to what bit of former identity we still have. It is not intended as a "put-down" of anyone else or an "elevating" of ourselves. It is just part of who we (still) are - one piece we have not lost when we have lost so much.

    ReplyDelete
  18. Excellent article, PA. I agree that most people cannot conceive of the severity of the illness. Of course, the root cause for the consistent denigration of "CFS" is the belittling name. However, beyond that, the severity continuum you mention is a crucial element to comprehending this disease. If a campaign focused exclusively on 'the very bottom', I fear it might result in a different kind of credibility problem for disease comprehension. All those who are perhaps not currently at 'the very bottom' might be considered not to have the disease. Research studies that describe what percentages of patients fit into which part of the continuum (and for how many years into the disease -- e.g. sick 0-5 years, % mild, % mod, % severe; sick 5-10 years...) are the best way to get the point across, in my opinion. Are there any of these studies out there that can be trusted to have used the correct cohort?

    ReplyDelete
  19. It's no secret that "CFS" was a direct response the evidence from the 1985 Tahoe "Raggedy Ann Disease".

    As the CDC was putting together the CFS definition, Dr Peterson kept calling Gary Holmes to keep him apprised that members of his "mystery illness" group were falling apart with strange cancers.
    Holmes responded that if cancer or some other serious illness cropped up to account for their "fatigue", that this would remove them from the CFS category, and they should be referred elsewhere.

    Dr Peterson was appalled.
    Holmes had completely missed the point.
    Or perhaps, wanted to!... as it seems inconceivable that a trained epidemiologist could reach such an odd conclusion.

    ReplyDelete
  20. Anonymous,

    I am sorry if I gave the impression that we should focus "exclusively" on the most ill patients. My only point really is that we have to go there.

    Chris

    ReplyDelete
  21. I have neurologic symptoms, head bobbing, uncontrolled limb movement on my bad days. Hubby took a video of it for my LTD claim. To this day I can't watch it. I can't watch myself like that. I do have video of me skating in a competition the month before I got sick. It is a startling contrast to say the least.

    ReplyDelete
  22. can the anonymous poster who is now coming back to life w/treatment after spending years living in a darkened room, please share what she/he is doing to recover her/his health.

    it would be greatly appreciated by the rest of us still living in the darkened room.

    thanks,

    ReplyDelete
  23. today at my doc appt....my wonderful kind dr asked my husband to describe the difference between who i am today vs. who i was before becoming ill. it made me cry to hear it all verbalized by husband. we have all lost so much. please let the day come soon where we recover it!!!!!

    ReplyDelete
  24. Thank you for raising this topic. When I was first diagnosed with chronic fatigue syndrome, I started visiting forums to find an online support group, and reading blogs and other personal narratives to learn more about the disease. I'm ashamed to say that I was so appalled and frightened by the stories of the severely ill that I turned away. Or ran away, more like. It was like a spectre that so frightened me that I wanted to convince myself that it couldn't happen to me. That those people were somehow constitutionally or psychologically different from me. And because of that, I couldn't, or didn't, hear their stories. I didn't reach past my horror to find the people inside those wracked bodies.

    It took a long time to reach a level of acceptence that allowed me to get past that fear. And when I finally stopped shutting out the stories of the severely ill, it was so painful to witness that it was hard not to be overwhelmed by sadness at their plight. Only gradually, by getting to know some of them on patient forums, have I been able to get past all that to see the people inside. People who are, in fact, like me.

    I think that sometimes it's a similar reaction that causes so many doctors (and others) to react as they do, with disbelief and denial. It's too frightening to think that a previously healthy person could be stricken so randomly. To think that a person could be in so much pain, be so ill, lose so much functioning, and there not be a more obvious, tangible, palpable cause. People don't WANT to believe something so frightening, so they don't. They'd rather believe that either it's not true and the patients really aren't that sick, or there's some flaw in them that keeps them from getting well. The doctors want to believe that this couldn't happen to them or to their loved ones. Then they tend to switch into "I don't understand what's wrong with you, therefore nothing is wrong with you, you only think there is."

    I'm afraid that before I got sick, I reacted much the same way. I'm not sure how you overcome people's fear and denial, to help them to see the human beings inside the illness. And without that, I don't know how they will accept that the illness is real.

    ReplyDelete
  25. Thank you for your recent blog, PA. After years of silence, it does seem that our individual voices are finding expression; and it's empowering and healing to be apart of the re-awakening...for myself and others.

    I have been slowly coming out of the (CFS) closet since late February 2010, the month I learned about the Science publication. So it's been about a year since my liberation began.

    Before that, I lied about my illness and how much sleep/rest I needed every day. My life was focused on work, and it took 7 days to manage it. There was no social life, just a daily grind of stress. After years of barely hanging in, I experienced several 'walled up' episodes and finally lost my job. I am housebound now, and when I lost my life's work it caused me to lose myself for a long while.

    Today life is different. I'm still sick, but I have hope. I don't lie about the illness but am choosy who I tell. I have a doctor who believes me and if I cross paths with one who doesn't I'll fire him/her. Best of all, I've experienced a re-genesis of self-respect that's been missing for years.

    Yep, life has improved since October 2009; and I'm hoping it will get even better for all of us this year.

    ReplyDelete
  26. very well said. perhaps we can work collectively on a video or series of videos, a before and after of each of us who is sick. someone will be good at editing, someone will be good at organizing, someone will be good at getting the word out, at doing "PR". we each take a small part and we can accomplish a lot, but only if we work together.

    ReplyDelete
  27. Consuegra,

    I couldn't agree more. Videos would be great. I sometimes make the severity point by explaining to people that an ME/CFS specialist once said that there were 2 patients of theirs who were so severely ill that they were forced to live in a nursing home. They didn't have anyone to take care of them. They were 31 and 32 years old. They were at 0 or 1 out of 10 on the Functional Capacity Scale. I'm at 3 out of 10.

    ReplyDelete
  28. This is a wonderful post. I agree we need to focus on the worst cases in presenting this to the outside world (not trying to pass them off as typical cases of course) because seeing the worst cases, one can not say 'this is all in that person's head.'

    I would love to see the video of the Norwegian family. Wonder if that has ever turned up on the web or if Dr. DeMerlier could upload it. If anyone knows him, pls ask him for me.

    pls keep up the great work.

    ReplyDelete
  29. This is phenomenal. Thank you for putting together such a stark picture of what this illness can be like.

    I don't think we need to have "After" pictures here. The description is enough.

    But we do need "Before" pictures, to show that our communities and our societies have lost valuable members as a result of this terrible illness.

    Best, Lisa Petrison

    ReplyDelete
  30. I took this idea to heart and today when I submitted my packet of medical evidence to social security to apply for disability it included a video of me figure skating in a competition and of me trying to walk when I'm in full blown shakes mode.

    ReplyDelete
  31. Hey Chris, hope to see you at the conference next month. This really is very good writing. I've always said that two things need to be done..get rid of the misleading name and create public awareness as to how horrific of a disease this is, guess those two go hand in hand.

    You shed light on how horrible the disease and it even goes much beyond what you mention. Brain fog is really just the precursor of whats to come. It's very hard to explain, even from patients who are alive to express what happens its very difficult to describe what comes after the brain fog. The best way I can describe it is complete neurological dysfunction in so many ways that it literally traps you inside your body, brutal torture. Yes, the need for complete isolation on the patients behalf is a must for survival, the ability to block out all that is going on around you. The severe nervous system hyperstimulation makes any sensory imput and energy output impossible to handle..light, noise, touch..even a mere thought, yes even the thought process can be brutal and thinking becomes nearly impossible in itself.

    Keep up the good work

    Mike Dessin

    ReplyDelete
  32. If we want clarity, stop promoting ME/CFS. What is ME/CFS? Always a hasty retreat. ME/CFS IS the scrambled mess. If we don't know what it is, how could anyone else. And it is used to mean different things, and there's CFS/ME. Or frequently even see different terms within the same article, CFS this and ME than and ME/CFS patients.... We want clarity, yet this digs us in deeper.

    ReplyDelete
  33. Here's a bit of clarity regarding ME/CFS.

    -----------------------------------------http://www.meactionuk.org.uk/Byron_Hyde_Nightingale_Research_Foundation_Paper.htm

    Nightingale Research Foundation
    Paper Presented by Byron Marshall Hyde M.D. -
    New South Wales, February 1998

    Are Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Synonymous Terms?
    Phase #3: The chronic phase of the principal illness then followed phase #2. In 1988, it was this often-amorphous phase #3 that the CDC labeled Chronic Fatigue Syndrome (CFS). Where M.E. and CFS overlap, they undoubtedly represent the same illness, however, due to the considerable definitional and conceptional differences, CFS and M.E. should not be considered to be the same illness.
    -----------------------------------------

    When CFS and ME overlap, ARE the same illness, and the CFS diagnosis is of a patient who possesses all the primary determinants of ME, then ME/CFS is perfectly correct and accurate.

    This is a way to "play the game" within the parameters of a poorly contrived "CFS" construct and STILL make sense out of the Kafkaesque
    name-game situation that was foisted upon us.

    And since the CFS term is not going to disappear just because people want it to, they had better start thinking about how to play the game and win.

    ReplyDelete
  34. Hmmm, if a patient possesses all the determinates of ME, they have ME. How profound! See how easy this it? CFS hardly adds to it in any meaningful way, would anyone argue with this point?

    And what of the cases that do not overlap. CFS has been broadened to include many things that are not ME; thus they are not the same. ME/CFS implies that thy are. Thus ME/CFS makes no sense scientifically or even logically. Advocacy is about accomplishing what will best help patients, not siding with those who oppress us. It cannot be a game, and no it cannot be played with CFS. For years getting rid of CFS was a main focus of advocacy, suddenly these groups pop up and change direction, of course with the usual draconian censorship of others.

    No patient with ME should have a diagnosis of CFS, even attached in some bizarre (?masochistic) form of ME/CFS or CFS/ME.

    ReplyDelete
  35. I actually did have my husband take a photo of me at my very worst. I looked like I was days away from dying. I was going to provide that horrid photo and a photo of me with pounds of makeup (sick and cleaned-up) to a group that wanted to show what an invisible disease looks like. But I lost that photo. Not a big deal since I often look like someone near death so we will get another "slow death by ME/CFS" photo soon.
    Great post. Thank you for the insights you provide. I wish the healthy folks would read your posts so that they understood how we sick feel and how we navigate through life. And yes, most of us plan ahead for any sort of activity and save up energy to do the simplest things like going to the supermarket and knowing that when we get the freezer food into the freezer we can go and lay down and recover from the BIG trip to the market.
    Our rare trips out to the real world are very misleading. We look fine. But fine takes time to get into the shower, get the make-up on, and the non-PJ clothes on a body that wants to go back to bed and just stay there.
    Thank you again for another great post.

    ReplyDelete
  36. Another great post, PA. I nominate your son, the videographer, to do this project. If there is anything I can do to help, let me know.

    We need to fight the disinformation campaign as if it were an ad campaign. That's what the disinformers have done for decades, with great success.

    Think photos of children with birth defects and the campaign for donations for their surgery.

    Think of the little Vietnamese girl on fire with napalm.

    A picture might really be worth a thousand words.

    ReplyDelete
  37. Regardless of whether anyone wants CFS to be ME, that was the term which was applied by the Holmes committee to an illness which had all the primary determinants of ME, for the purpose of researching that illness.
    "Thus"... CFS is ME.

    Dr Byron Hyde was the first physician to use ME/CFS, and did so in the context of a CFS term that was directly given to "a typical outbreak of ME".
    This is why Byron Hyde says what he does:

    "Where M.E. and CFS overlap, they undoubtedly represent the same illness, however, due to the considerable definitional and conceptional differences, CFS and M.E. should not be considered to be the same illness."

    "Getting rid of CFS" was "Change the name back to ME"

    The assertion that CFS is a terrible name, but that CFS can and should be changed back to ME is one thing, and is consistent with the facts.

    Saying that "CFS is not ME" is the exact opposite, and is attempting to say that although the term was coined in response to ME, the syndrome has nothing to do with the illness under consideration, and only applies to an imaginary abstraction INSTEAD.

    That's like taking a picture of a zebra that is so overexposed that one cannot see the stripes, and saying "Looks more like horse. It may as well be... thus it's a horse".

    And I suppose if you have a passport photo that looks like Margaret Thatcher, then that is who you must be.

    ReplyDelete
  38. Today's CFS is not the CFS of the Tahoe outbreak. Thus, today's M.E. more correctly describes yesterday's CFS.

    ReplyDelete
  39. Anonymous.

    Professor Wessely's ME of today is not the Ramsay ME of the Royal Free outbreak, thus,
    this maketh Wessely righteth?

    Misinformation becomes truth by majority rule?
    Truth becomes stale and irrelevant with the passage of time?

    It's a shame to see how many misrepresenters and propogandists are on this planet, but just because they have truthtellers massively outnumbered doesn't allow them to turn falsehood into truth.

    They aren't going to get away with it.

    That they even tried, and tried so HARD to promulgate such fiction, is going to reflect very, very poorly upon them.

    Surely they should know that science does not stand still forever. They WILL be found out!

    ReplyDelete
  40. Erikmoldwarrior - those who have ME want ME recognized and diagnosed as ME. Not CFS. Not connected to or linked with CFS. ME is ME. It is not a name change. The definitions are different. this is clarity.

    CFS has failed as even what you so desperately try to say was intended to describe ME. It hasn't worked. Then using all the mixed up terminology and different meanings or the same name for different things and different names for the same thing is nonsensical. No wonder no one "gets it."

    ReplyDelete
  41. Wessely's ME of today is not recognized by the W.H.O. so his M.E. is meaningless. I don't care what the weasel thinks anyway. I'm in the U.S.

    I was diagnosed by Byron Hyde in the early '90s with M.E. (yep, traveled to Canada) Not by Simon the Weasel or Peter What?, etc. So I take offense at anyone trying to associate M.E. with CFS and it's myriad of official definitions... Holmes, Fukuda, empirical. These definitions ARE recognized by the U.S.

    It should have been recognized as M.E. (Ramsey) in Tahoe. Recognize it now.

    And drop the lithp, Eric, it's getting a little ad hominen.

    ReplyDelete
  42. Then you must take offense and Dr Hyde, for he is the one who made the connection.

    --------------------------------------
    A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome
    -Byron Hyde M.D.

    "If we consider the Lake Tahoe epidemic alone we have the primary definitional determinant of Myalgic Encephalomyelitis."

    "Yet retain these above Lake Tahoe features in mind when we come to the first CDC definition that was largely based upon this very same Lake Tahoe epidemic illness."

    "Conclusions: Definitions are not diseases, they are often simply the best descriptions that physicians and researchers can offer, with their always imperfect knowledge, to describe a disease."

    ---------------------------------------------


    Since "CFS" was applied to "a typical outbreak of ME", the only way you can think of CFS as being other than ME is to make the definition into the disease.
    Yet as Byron Hyde says, definitions are not diseases.
    In that case, CFS is an disease which possesses the primary definitional determinants of Myalgic Encephalomyelitis, albeit imperfectly described, for reasons which were politically rather than medically derived.

    ReplyDelete
  43. Once a person has been shown that CFS was the term directly applied to a typical outbreak of ME, he may curse the name of CFS, wish for it to be changed, despise the fact that it ever happened, but cannot say otherwise...
    or he ceases to be honest.


    "An honest but mistaken man, once shown the truth, either ceases to be mistaken or ceases to be honest."
    —John Quincy Adams

    ReplyDelete
  44. Erik, As anonymous just said, Wessely's ME is not ME but CFS that is called ME. And no, CFS does not possess the determinates of ME, which is the problem. Definitions should as closely approximate the illness as possible and CFS does not. CFS was mistakenly applied to what was ME and it is dishonest to completely twist it around. The truth is universally recognized that Incline Village was ME. Mistakes can be corrected.

    ReplyDelete
  45. Erik, was CFS applied to the "typical outbreak" honestly?

    ReplyDelete
  46. Once a "person" has been shown that CFS was the term directly applied to a typical outbreak of ME, she may curse the name of CFS, wish for it to be changed, despise the fact that it ever happened, but she cannot say otherwise...
    or she ceases to be honest.


    "An honest but mistaken woman, once shown the truth, either ceases to be mistaken or she ceases to be honest."
    —John Quincy Adams

    ReplyDelete
  47. Anonymous.
    Yes, the elements for the CFS criteria were taken directly from the medical charts of patients that Hyde, Parish, and Shelokov pronounced to be "ME".

    This is why they walked out in protest.

    If the CFS term and criteria were being applied to some other entity, ANY other entity, there would have been no reason for them to protest the Holmes committee's decision.

    ReplyDelete
  48. I don't think anyone here is asking for the name CFS to be changed (especially since the definition has been changed). Just that M.E. be recognized in the U.S.

    However, according to the new U.S. ICD 10, it appears it will be and will exclude CFS from the G93.3 category and relegate CFS to the Not Otherwise Specified R53.82 category. So, once the ICD 10 is instituted, it will be up to patients who want one, to seek an M.E. diagnosis from their Dr. I believe there are Drs. in the U.S. already doing this.

    Because of the new ICD 10, we need to stop combining the two terms as they will officially be two different conditions in the near future.

    ReplyDelete
  49. "Hyde, Parish, and Shelokov pronounced to be "ME".

    This is why they walked out in protest."

    Then it wasn't applied honestly.

    ReplyDelete
  50. Anonymous, precisely!

    CFS was not "mistakenly" applied to ME.
    This was done intentionally and with full knowledge that the illness-entity already had a name.

    It is disingenuous for those who know there was no mistake to portray it as such, as they are implying that CFS was directed at a different illness, and therefore, has no relationship or connection with ME.
    When someone who KNOWS that this renaming was intentional but tells YOU it was a "mistake", they are engaged in an act of deception that is, ironically, no different than the CDC.
    They are attempting to recast the event as accidental or inadvertant, to make it "easier" to correct.

    Their goal is identical, to mislead you to believe that a fatigue illness was the target of "CFS", rather than an illness which possessed all the primary determinants of ME.

    Their use of the word "mistake" is no mistake.
    Their intent is to fool... YOU.

    ReplyDelete
  51. So how do you spot someone who isn't playing any games?
    (Try it.. it's fun AND educational)

    "Do you agree that ME and CFS are the diseases to which those terms were originally applied"

    The "Disingenuators" cannot bring themselves to simply answer "Yes".
    They will choke, hem and haw, and break into protracted ramblings and lengthy dissertations about how definitions should match the disease.

    But that doesn't answer the question.
    The question is,
    "Do you agree that ME and CFS are the diseases to which those terms were originally applied?"

    ReplyDelete
  52. If you began all ME and CFS discussions by asking each participant to answer that question, and force all the non-answering acoloytes of ambiguity whose opinions are therefore rendered IMMATERIAL and IRRELEVANT, to GET THE HELL OUT... then, you would have clarity.

    ReplyDelete
  53. Dr Peterson is often referred to as an "ME specialist" by a few who seem to be attempting to go ahead and change the name right now.
    Yet Dr Peterson is known as the doctor whose phone call to the CDC in 1985 literally started the CFS debacle, and his cohort is called "The original CFS cohort"

    If someone knew nothing more than this, it would tell them that ME and CFS must be the same thing, or at least the person who called Dr Peterson an "ME specialist" must surely think so.
    So when that very same person turns around and says "CFS is not ME", he must be confused about something.
    He is clearly well-educated about ME and CFS or he wouldn't have felt at liberty to switch Dr Peterson speciality like that. It is plain that he KNOWS that CFS is ME.

    Dr Peterson knows what kind of specialist he is... yet Dr Peterson still says "CFS", so who is confused here?
    What a scrambled mess!

    We can see what is going on.
    The well-educated person who switched Dr Petersons speciality is pulling a semantic trick. Dr Peterson's "CFS" credentials refer to the DISEASE and the well-educated person knows this. He selectively substitutes the CFS DEFINITION for the disease without saying so.
    Rather than saying "The CFS Syndrome does not accurately reflect ME", he just says "CFS is not ME" and hopes that others will think "The CFS disease is not ME-disease", that eventually Dr Petersons patients will be in such dread shame for not having the mighty ME that they will never utter the horrible rotten fatigue word again.
    This seems to be the way they want to get rid of the CFS term. By shaming CFS patients, even as they retain a peculiar "exemption" for the CFS doctors or the WPI's science paper, which found XMRV in "CFS".
    It's OK for the prominent CFS doctors to say the CFS term, but anyone else must be bludgeoned and shamed until they are in fear of uttering the hated CFS name.

    Amazing.

    The "well educated" people who say they want clarity are the VERY ones responsible for creating the confusion.
    And just LOOK at the tactics they are using!
    Intimidation and obfuscation!

    It's easy to see this is deliberate by the way they keep pulling this little trick, even after they get called on their little game.
    They're too well educated to be confused about Dr Petersons speciality, so it is clearly intentional, and they intend to keep spreading confusion.

    These people don't have the solution.
    They're creating the problem.

    ReplyDelete
  54. CFS never introduces clarity. Whatever CFS was applied to or why, it has failed. And talk about the "non answering acolytes of ambiguity," this would be ME/CFS. What is it? People become apoplectic or go berserk. So why do we think it is a solution. Means different things to different people.

    There are different names for the same thing or the same name for different things, then we combine them, but different placement or order means different things. ME/CFS is not CFS/ME, we pronounce indignantly! This is about as meaningful as our old campaign of CFS is not chronic fatigue.

    Scientifically it is bad enough, but we have people with alleged PR backgrounds who are going along with this. Then we moan and groan that people do not get it and no one understands. Time for "term limits."

    ReplyDelete
  55. Scientifically, nothing could be simpler.

    ME and CFS are the terms for the diseases under scrutiny when they were applied.

    Any alteration from that principle is a distortion, either inadvertant or deliberate.

    The former is an honest mistake, easily corrected.

    The latter is lie, easily exposed.


    --------------------

    There is no time limit for facts.

    ReplyDelete
  56. Fact is that CFS was not adequate when it was applied to Incline Village (ME), whatever it was meant to be. Fact - ME experts walked out. Scientifically CFS is not ME. CFS is what the deniers want and need to bring in all the psychospeculation. Those who ignore these facts and twist the facts (while ignoring the key ones) to force the acceptance of CFS are the deniers and enablers.

    ReplyDelete
  57. "Definitions are not diseases".
    A bad definition/name does not alter the entity being described.
    Scientifically, the object or entity remains the same, regardless of what it is called.

    Your assertion clearly encompasses Dr Cheney, Dr Peterson, Dr Bell, Dr Klimas, and now Dr Judy Mikovits.

    The conflicted nature of your philosophy is apparent.

    ReplyDelete
  58. I am not sure that showing the very worst patients would help. When I am bedridden and looking like a pale corpse with dark circles under my eyes, I have had people come in my bedroom and say things like "Why don't you put on a bit of make up and get up".
    I have seen comments on a newspaper article showing a girl with a feeding tube in a darkened room (that happened to be filled with toys) with comments saying things like "Get rid of those toys, eat a healthy food" and "can't they just get her slowly used to a bit of light".
    Showing the very worst patients "at the core" as PA puts it would definitely be better than the c#$% that passes as CAA advocacy at present. But it would not be as good as just adoping the Canadian definition and concentrating on biomedical research.
    I noticed more respect from doctors after the publicity with XMRV virus than many videos.
    Let's face it, our desease is not visible like smallpox. Looking horribly pale with rings under the eyes (even while we feel half dead) and lying in the dark is not enough to convince people we are ill b/c so many depressed people have this appearence.
    The only films I've seen that show seem to make a proper difference on the healthy are those made by advocates Greg and Linda currently on youtube. I suspect that this is only because Linda has very visable muscle twitching.

    The before and after thing would work for those that are lucky enough to have a good photo of themselves ice skating or running a marathon before illness. The problem with that is that before I got ill, I did not think of having my photo taken in physical action just in case I would get ill with M.E the following year. This illness usually takes people by surprise.

    I say just funding biomedical research would probably do it's own advocacy. XMRV publicity has helped more than many videos... and I am saying this as a person who does not even believe XMRV is the cause but an appotunistic virus.
    I don't think that the goverment will ever do much research. This all/mostly has be done privately unfortunatly.
    - Rachel

    ReplyDelete