Comment on Dr. Lapp’s Blog Post

Here is my comment on Dr. Lapp’s blog post from yesterday, What Are The Most Important Things To Remember About CFS/FM? The comment is awaiting moderation.

Dr. Lapp,

I am a patient and I appreciate your contributions and your commitment to helping the ME community. But I had a hard time with this piece. It touches the it’s-all-in-your-head nerve with me and other patients. There is no doubt that emotional equilibrium  (acceptance and attitude) can be healing for all chronically ill. And, of course, pacing (adaptation) is crucial to avoid further deterioration for ME patients.

But I think it is very important for the few experts in the area to keep in mind their potential audience and to be fully aware of their responsibility in not painting a picture of the illness that is easily misunderstood. Patients are ridiculed, shunned, blamed, disbelieved and judged by their family, friends, neighbors, colleagues and physicians every day. After reading this blog post, it might be easy for those “non-believers” to feel justified in their unfair treatment of patients. After all, if the big difference between remaining ill and recovering is acceptance, attitude and adaptation, then it must be a patient’s fault that he or she has not yet gotten well.

Why not first establish how serious this disease really is and give a couple of examples of people’s incredible limitations due to the illness, so that whoever reads this post written by one of the specialists, you, can fully appreciate how hard it is to accept and to adapt? And why not stress, just to make sure there won’t be any misunderstanding, as there are already way too many when it comes to ME, that while attitude is important, ME patients have lots and lots of abnormal test results; you know, test results that cannot be explained by false illness beliefs? Also, why not mention that “recovery,” which you mention, is extremely rare?

Again, I am not contending that emotional stress is toxic for ME patients and that we need to minimize it whenever we can. But I worry about an article being out there that was written by a specialist and that promises in its title to explain the most important things about ME without even hinting at how serious this disease is.

Ok, so now after speaking my mind, I will work very hard on going to my Zen place again. I promise.



PS: I am using the term ME instead of CFS, as many patients find the name Chronic Fatigue Syndrome, or worse, chronic fatigue, derogatory and misleading.

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41 Responses to Comment on Dr. Lapp’s Blog Post

  1. Sarah says:

    Jeannette- thanks for the heads-up on this. I posted a response as well. It will be interesting to see if it makes it past the moderation stage and onto his blog. Here’s what I wrote:

    Dr. Lapp- you had me until the last sentence. I’ve had ME/CFS for the last 12 years. My life prior to this illness was not unhealthy or self-destructive, nor has it been since becoming ill. Quite the opposite, as a matter of fact, and to say otherwise would be to imply that my prior (or current) lifestyle is the root cause of my illness. I’ll grant “ambitious and active” but those two verbs are not, to me, negatives, but only what most of us want from our lives- meaningful work, and active engagement with other people and the world. So let’s ‘accept” that we need to set limits on what we used to be able to achieve without concurrently demonizing the lifestyles that pre-dated the onset of illness.

  2. Sarah says:

    Also, I re-read this sentence and wish I’d also responded to it: “Persons with CFS/FM respond to emotional stresses as if they were physical exertion. In other words, emotional stresses like deadlines, emergencies, and confrontation sap away physical energy.” He seems to be saying that people without ME don’t respond physically to emotional stress, when of course, everyone on the planet does, though the consequences of ME/CFS mean we often have a much lower tolerance for all kinds of stress.

  3. Sarah says:

    I know. it just goes to show that many people end up being in charge of things of which they have no real understanding. Like preachers who don’t understand suffering or politicians who don’t understand poverty. You have to walk the walk. It reminds me, oddly enough, of all the coverage of Whitney Houston’s death. People are analyzing and pontificating all over the place about her mental and emotional states, her personality traits, her lifestyle choices, all of which somehow caused her death, in their opinion, when they really know nothing about it. Not to mention the fact that she suffered from the very real disease of addiction, a medical condition that has nothing to do with fame.

    • i agree that it’s difficult to really understand something one hasn’t experienced. but i find it hard to believe that dr. lapp doesn’t know better. i think sometimes researchers and clinicians do not totally take into account how their labeling or describing of things is going to be perceived or used against the patient population and that’s not always responsible in my opinion. they don’t say these things in a vacuum and if they talk about a very misunderstood disease and their statements contribute to or perpetuate the misunderstandings, then I feel this should be pointed out to them and ideally, they will stop and think about that. realistically, though, i am afraid, they often won’t.

      • Sarah says:

        Well, he also says this on another page about what to tell people about ME/CFS:

        “I generally do not recommend that you discuss your illness with acquaintances. Many people misunderstand CFS/ME/FM. They may fear that you are infectious, or may avoid you for other reasons. Any way, unless you’re seeking pity there’s no reason to “wear your illness on your sleeve.”
        I find this staggeringly patronizing. Are we to never bother with educating people? Because people might treat us like lepers? And to imply that the only reason we might tell acquaintances is because we are seeking pity? To me this smacks of “sit down and shut up”. Who IS this guy.

        • i saw that, too. i went back a couple of posts just to see if he ever approves comments. doesn’t look like it, but we shall see.

          it is indeed patronizing. and it’s also completely off the mark. i have never experienced anybody being afraid of catching what i have, maybe b/c many people don’t believe i have anything. but the whole leper problem that he talking about is a not really a problem at all. i am pretty out there with having ME and not once has anybody shown any sign of being worried for themselves or their kids. making this point shows somewhat of a detachment from what the real social issues are for ME patients, which is that most people don’t understand us. and not talking about the illness is not really going to help with that, is it?!

          and there is something about the wording of this that rubs me the wrong way: “wear your illness on your sleeve” and “seeking pity.” sounds a tad too judgmental for my liking.

  4. Kathy D. says:

    I am too tired right now (tech help at my house today, new gadgets which I could not set up; now I’m exhausted) to read “Dr. Lapp’s blog.” I don’t want to “stress” myself out right now. Have a big birthday for a friend tomorrow and my attendance is mandatory.
    For his information, for those of us who accept, have a good attitude and adapt, pacing ourselves every hour of every day — and we are still debilitated and getting worse as we get older — then what? What does he have to say about that? I’ve had this illness for 26 years. I have adapted. I’m home all week so I can go out to dinner on one day. I’ve skipped and cancelled medical appointments for weeks and months due to lack of energy to do what I have to do to get to them. I have reactions to almost every medication, even with one-half of a dose. I have secondary illnesses. If I overdo it, I get a fever, horrible body pains, can’t even take a shower.
    What I do not understand is: Don’t these so-called experts read the literature, the studies of biomarkers which have been found, lots of them?
    This ridiculous statement “wear your illness on yoru sleeve” and “seeking pity” — what is that? I actually don’t tell most people I know, only the closest friends. I don’t think it’s other folks’ business and I don’t want my health to be on their agenda. I’m not comfortable discussing it with most people so I don’t.
    But you’re right: It is judgmental.
    I will say that stress does exacerbate this disease’s symptoms from my experience. When my mother got dementia and I had to deal with a lot of things, I could barely get out of bed. When I recently had to deal with something very stressful — on the phone and email — that’s all I could do for more than week. My muscle pain worsened and I was way too exhausted to do one other thing. I still have follow-up and it exhausts me to think about it. And then no energy to go to appointments.
    I wish the cause would be found to quiet these judgmental nay-sayers. To let them know they’re all wrong. To perhaps elicit some guilt at how they’ve mistreated us.
    After all, we are living with this disease. We are smart, capable, thoughtful, articulate people. We just have to keep on standing up to this patronizing, unscientific gibberish. Enough said!
    And you said it very well, by the way.

    • good decision. dr. lapp’s post has the potential of being upsetting, so i am glad you are protecting yourself while you are at a low point.

      you are absolutely right. many of us work very hard on having a positive attitude in spite of huge obstacles (attitude) and on pacing every minute of the day despite the fact that pacing is a very unnatural way to live once life (adaptation). and we definitely realize that chances of a recovery are very slim (acceptance). so, we are doing all these things that dr. lapp says are required to get better and yet, we are doing very poorly.

      i have to believe that dr. lapp is aware of all the research. i think medical professionals and researchers can be tone-deaf at times. maybe they have to be to protect themselves. maybe taking in, day in and day out, what’s it’s really like would be too hard to process for them emotionally. i just wish they’d remember that when they publish their thoughts.

      stress absolutely makes us worse, but as sarah pointed out, this is b/c we have such a low tolerance for any kind of assault on our body: physical exhaustion, medication, accidents, surgery, chemicals and emotional stress. i feel that medical professionals have a huge responsibility in how they frame that reality. describing it in a way that can easily be perceived as blaming the patient is undermining patients who really don’t have any reserves for dealing with the fall-out. it’s somewhat ironic that putting out a piece that puts unwarranted emphasis on the mind-body connection actually creates a stressor for the patient community.

      One thing that I experience over and over with the medical community (with very few, but much appreciated exceptions) is that physicians just assume that we know nothing about our disease and the research, which is so, so ironic b/c in 99.9% of the cases, many of us know quite a bit more than the doctor. Many of them don’t even take 2 minutes to try and gauge how educated we are about our health. We are being talked down to and treated like 5th graders. It is such a lost opportunity for cooperation. Quite tragic actually.

      • re my last paragraph, i should probably add that i know that dr. lapp knows much, much more about ME than i do (unlike most MDs). he’s been spending about 30 years trying to help us. so, my comment wasn’t aimed at him. i also don’t know what kind of doctor-patient relationships he has. he may treat his patients with lots of respect and treat them as equals. i was just talking about your typical physician, in my experience and that of countless patients, which is that we are presumed to be intellectually inferior to everybody with an MD behind their name.

  5. Anony says:

    Wow, I would never see this doctor for help.

  6. Sarah says:

    Well, I checked his site just now- last night my comment was shadowed on the site with the status “pending moderation” and now it’s gone altogether. So I guess you were right, he’s not approving any comments (except, perhaps, positive ones?)

  7. Ash says:

    Excellent comment, and I couldn’t agree more! Not surprising, then, that it was their FB page that pulled the image I blogged about!
    I noticed that none of their blog posts have comments – which makes me wonder why they bother with having comments enabled in the first place…? Maybe they’ll post yours but I wouldn’t hold my breath.
    Great to “meet you!”

    • what a coincidence, ash!

      yes, i was wondering about the same thing: why not disable comments altogether? it took a lot out of me yesterday to write my comment and i am paying big time for it today. had i known that it wouldn’t get posted, i could have spent my resources differently. but maybe it’s just a matter of being unfamiliar with the features of wordpress.

      very nice to meet you, too, ash!

  8. Kathy D. says:

    I think a lot of medical professionals think in a certain way and can’t go out of the box. They have preconceived notions and are not open or flexible in being able to take in other information, which might contradict what they think. It could turn their worlds upside down to let in new phenomena or data or analysis or CFS-sufferers’ experiences, thoughts and conclusions. Many cannot do this. It’s rigidity. It’s going with what they learned in textbooks or what they’ve read in journals. Yet they can’t look or really hear people with this disease.
    It’s really ridiculous to not publish comments from CFS-sufferers. Perhaps he feels challenged and can’t deal with it. Maybe he has his own agenda and doesn’t want to see other interpretations on this disease.
    Who knows? Being open to new thoughts and experiences and listening to ill people would be a big plus for any doctor, one would think. It’s called learning, tuning in, widening one’s thinking. But many medical “professionals” are stuck in a box and can’t move beyond it.
    I hear what is being said about “stress” and that it can be used to blame people for their illnesses or flare-ups. But between ourselves, I would say that it does exacerbate this disease. One has to put out a lot physically and mentally to deal with stress. It’s very tiring. It’s not like we’re running around doing 100 things a week and stress is just the 101st thing and oh, just take it in stride. For me, a heavy stressor is like a grenade just blew up in my apartment and I have to deal with everything surrounding it.
    Right now I’m recovering from co-organizing a friend’s birthday dinner at a restaurant. What I went through to get the cake there (which was delivered to my house) was stressful. Now it feels like a scene from a three Stooges movie. Couldn’t carry it, had to get out the luggage cart, which was dusty and needed to be thrown in the tub. Then I couldn’t secure the cake on it, and the cake box turned sideways. I was worried this expensive piece of artwork would be smashed — and my friend does all of her friends’ cakes and she is an artist. I thought I had to take a cab to the restaurant four blocks away, that the cake would fall off the cart at every curb. Now I can laugh. But the being on my feet, dealing with friends and the very nice wait staff, up and down, even good stress is making me feel like I walked 20 miles. And it was fun! Mostly.
    Then I got confused cutting the cake, with five people making suggestions and handing me plates and forks. I had to get past the moment and let someone else finish it. I was done. It all worked out. But I am wasted and it will take three days to recover. And this is good stress.

    • I think the way physicians are trained has a lot do to with their attitude and their rigidity. I have a lot of feelings and thoughts about the whole subject. I have encountered some big egos during my big firm career, but nothing quite like what I see with many MDs. I don’t think this is about to change, although I do wonder why society doesn’t take more issue with this huge problem.

      You know, I think I’d like to give Dr. Lapp the benefit of the doubt. Maybe he made a conscious decision one day not to allow comments for whatever reason. It would be good if he disabled comments altogether, so people wouldn’t be put off by him not publishing them. But I keep coming back to the thought that he is one of the good guys who are trying to help us. He may be clumsy at times with his statements, but he is certainly not the only one. I think it will take a real lobbying effort on the patients’ part to help them understand how big their responsibility with respect to public statements really is.

      That birthday party sounds like it took a lot out of you. I am glad you did it though b/c what’s the point of it all if we pace ourselves at all times? I mean why live if we have forego all joys, right? I think one of the “tests” for whether somebody really has ME is whether good stress also makes them worse (not just bad stress).

  9. Sarah says:

    I checked today and my comment has still not posted. Interestingly enough, in the fine print above the comments box it says that 83 comments have been blocked by spam. I wonder how many of those “spam” comments are from ME sufferers.

    • i think he just has a no-comment policy. it’s a odd to allow comments and then not approve them. but who knows, he may not even bet the one actually doing the posting and comment checking. there is a good chance he has an assistance doing it. at least now we know. but precisely because i had a feeling that my comment wouldn’t be approved on his blog, i posted it on my blog. that way, at least some people got to read it.

      if others want to post the comments they left in response to dr. lapp’s blog entry here, too, that’s fine with me.

  10. Beth Kessel says:

    I want to speak on Dr. Lapp’s behalf for those of you who don’t know him and are confused/upset about his recent blog post. I have been his patient since July of 2010 after falling ill the summer of 2009 with what my GP diagnosed as the H1N1 virus. You all know the story, I never fully recovered from this flu and was told in my many subsequent visits to my GP various things, such as, “You have a Vit. D deficiency, you have Epstein Barre, cytomegalovirus, coxsackie virus titers are really high. And then there was the “you are stressed, you are perimenopausal, you are causing the migraines with your worrying about your health” Followed by the real kicker – and final visit to my GP — “you just need to get out in the sunshine and get some exercise!”
    I did some research and found Dr. Lapp’s Clinic — I made an appointment as soon as I could get it with one of the two Doctors there – Dr. Lapp. Prior to my first visit I filled out over 30 pages of a questionnaire which I submitted several days before my appointment. I also had my lab tests (taken by my GP sent over as well as my medical history). Dr. Lapp came into the appointment having read through my paperwork, lab results and medical history. I was still a bit bitter about my previous experiences with my GP and was somewhat skeptical, but was in so much pain and sickness at that point that I was not able to function and truly needed some answers!
    Dr. Lapp spent 2 and a half hours with me and my husband that first appointment. He tape recorded the entire visit so that I would have a record of things discussed. He listened and was the most compassionate doctor I have ever had an appointment with. I won’t bore you with the diagnosis details and his medical recommendations (ME/CFS and Fibromyalgia) but I will tell you that he advised that this diagnosis was a difficult one and that he would strongly recommend using the name Fibromyalgia not CFS. He reasoned that there is so much bad information out there and too many people who would say “yeah, I’m tired too!” — the lack of support would be just another hurdle to overcome. — a hurdle that I didn’t need to use my limited energy for.
    Since that first visit, I have seen him twice and had several phone consultations. He has counseled my husband and me about our future in light of this illness. He has never rushed me through an appt. and is not a pill pusher. He has given me a plan to move forward in spite of being so sick that I didn’t want to — and for me — that plan has worked. (He even wrote a letter to get me out of jury duty over the Christmas holidays)
    That being said, I think perhaps his blogs don’t portray his warmth, expertise, and compassion and for those of you who were hurt or miffed about it, I am sorry, but please know from one of his patients, Dr. Lapp is an excellent doctor and has done so much good for those of us who are fortunate to be his patients.
    Thanks so much for your blog — I am grateful to read other thoughts and opinions — You are inspiring!

    • Hi Beth,

      I am really thankful for your comment b/c the more I read about Dr. Lapp, the more I get the sense that he really is on our side and one of the few “good guys.” So, I am glad that you confirmed this as a patient of his. But it makes some of his statements in his blog even more of a bummer. If the “good guys” manage to say things that can easily be used against us, then what hope is there that things will ever get better? It’s so very demoralizing, but from how you describe Dr. Lapp, it’s unintended. That’s why I am hoping he is reading and processing the comments people made in response to his latest blog post.

      Thanks for chiming in, Beth!

  11. Kathy D. says:

    All interesting. But perhaps these doctors should be more careful in what they say publicly so that it doesn’t further tarnish those of us with ME/CFS or increase the negative thinking and perceptions about this disease. What’s said should help establish the physical causes of this disease and why the symptoms reflect a biological basis of it, rather than a psychomatic one.
    When someone can’t do the laundry, run out to the store, talk long on the phone, is reading at a snail’s pace (one who loves to read who used to run through five books in a week), putters around the house for a bit and then has had it for the day, crawling to the TV, there is a physical basis to the cause.
    Yes. I’m glad I helped on the birthday party for one of my oldest friends, who at 72, runs rings around everyone else, even the healthy folks in their 30s.
    I wonder if Beth could share some of the things that are helping her. It might benefit us.

    • i agree with you, kathy. they should. and not just be careful, we need them to much more actively lobby for us publicly. if they don’t do it, nobody with any credibility will. the simon wesselys of the world have no trouble being out there with their crazy theories. we need our guys to counter-act that. e.g., if there is research out there that they think it outrageous (like the latest “brilliant” study that concludes that ME patients are just afraid to climb stairs; climbing stairs actually isn’t harmful for them, the study concludes even though it didn’t monitor post-exertional malaise), then why not comment on that and call it what it is: unscientific and irresponsible? and if they talk about the illness in any way, why not really drive the point home of how serious it is and how patients are abused and neglected like not many (any?) other patient groups.

      anybody who is comfortable sharing what’s helping them is more than welcome to do so. but i want to make sure not to put any pressure on anybody. some people prefer not to talk about that. i, for one, have absolutely no suggestions at this point since i am not really doing anything doctor-recommended. high-dose fish oil is about all i am doing these days. and pacing.

  12. Kathy D. says:

    Yes, of course! Down with the Darth Vaders/ME/CFS deniers of the world! Up with science, research, helpful contributions — articles, speeches, blog posts, conferences — and actions on behalf of ME/CFS sufferers! (I’m exhausted, reduced to slogans.)
    And on the climbing stairs issue: I am exhibit A on why this is a problem: I tripped walking up my building lobby’s stairs in 2000, zoomed up in the air and crashed, thus breaking my left femur badly, needing surgery and physical therapy. It’s still not 100%. In my building, going down the stairs is even worse, as there is one flight that is narrow, with railings on only one side and which don’t go all the way down. If I have to walk down those stairs, I feel wobbly and like I’ll fall, so I just stay inside when the elevator is not working.
    I see your point about not asking anyone to reveal anything they’re not comfortable doing, but if something is really helping — other than getting rest, pacing oneself, eating a healthy diet (not always; chocolate is needed, among other treats), and it’s really making a qualitative difference in one’s life, then I would implore, beseech, plead for information on this.

    • i am about to start working with my nutritionist again. she has made a big difference for me in the past (together with my acupuncturist). if i feel anything is really making a difference, i will be sure to post about it.

      your building sounds intriguing! and a bit dangerous.

      hey, i was wondering if you would be wiling to share what thrillers you like to read. i know that is a genre that you enjoy and i do, too. guilty pleasures. and since i have been spending more time in bed, i find i read more–on and off (can’t seem to go for super long stretches, but still get through a book in a couple of weeks since i can’t really sleep, so the days are long). i just read grisham’s pelican brief and part of it is set in NYC and i was thinking of you. that city holds a huge fascination for me and i really hope that i will be able to visit it again at some point of my life. anyway, one thing i like about grisham is how he so obviously hates big law firms, a sentiment that i can relate to quite a bit. i also really like nelson demille. most of his stuff anyway.

  13. Kathy D. says:

    Sure. I’ll share, but what genres do you like? U.S. Global? (I read a lot of global mysteries nowadays)? Contemporary? Historic? Legal? Detective? Fast-paced? Slower-paced?
    I read a lot since I’m homebound much of the time.
    I like John Grisham. I actually learned quite a bit from his books. I’ve read all but the last few.
    One series I love is by ex-pat Donna Leon, who lives in Venice. She writes about Police Commissario Guido Brunetti. No gore or violence on the pages, a good inspector who thinks, with an interesting staff and home life. Often social issues are involved. He’s a compassionate guy. Her books are widely available in the U.S. now. Not ponderous reading.
    I like Icelandic writer, Arnaldur Indridason. I’d recommend The Silence of the Grave, Arctic Chill, Jar City and Hypothermia. These books are quite heavy, not for when one wants escapism and diversion.
    Michael Connelly is very well-liked here and abroad. He writes two series: one about Harry Bosch, a L.A. cop with integrity. He is a deep thinker, not a usual police procedural. Another series is with Mickey Haller: The Lincoln Lawyer (I liked this) and others since.
    Sara Paretsky: I like her writing and character, V.I. Warshawski, a tough, fearless and smart woman. Her books are usually chock full of social and political issues. Her latest one is causing consternation abroad because it is so politically partisan. Paretsky is very pro civil liberties and civil rights, and this all shines through her fiction.
    I’m reading book 2 of a series by Ariana Franklin (pen name of the late British writer, Diana Norman). It’s historical fiction about a woman doctor from Salerno who goes to England and helps solve crimes and take care of the sick. She’s a coroner. I am not a fan of historical fiction usually, but this series is a lot of fun. Adelia Aguilar, a feminist and scientist, way ahead of her time, is delightful. I get immersed in this world and forget everything else. The first one is Mistress in the Art of Death. (Everyone who reads this series likes it. I’m also appreciating our running water, showers, electricity more and more.)
    I’ll leave that list for now. If you have specific preferences, let me know. I find that if I’m under stress or in a lot of pain or exhausted, this is a perfect distraction. It’s not unhealthy.

  14. Kathy D. says:

    P.S. I hardly read books set in New York. Another series that is fun and not too heavy is Sue Grafton’s alphabetical series. Her writing improved as she went through the alphabet. I just read V is for Vengeance during the holidays and it was perfect for destressing with her detective, Kinsey Millhone, in California

  15. Kathy D. says:

    Write if you want to write. But I’ll say sitting here on any stressful, tiring day, with some good mysteries, tea and some type of chocolate (contraband), is sheer bliss, especially if the books are distracting.
    Also, humor is good. It helps when one feels awful.

  16. Kathy D. says:

    A few suggestions on light and humorous books: Lisa Scottoline writes stand-alones, but she wrote several books in a series about a women’s law firm in Philadelphia. They’re light books with humor.

  17. Kathy D. says:

    There is a study on Internet CBT, which allegedly helps youth with ME/CFS, and it’s posted at the CFIDS Association website, in the Research section. It just put a few more gray hairs on my head and is bound to aggravate every single one of us with this disease. It’s just maddening.
    A commenter there said that it is posted at the HHS Office of Women’s Health. I guess we’re back to leeches, bloodletting and “pacing ourselves” while jogging.

  18. Kathy D. says:

    I’m putting this up here as I don’t know where else to put it, but WPI just finally lost any credibility or standing with their annual report posted online with this tremendous and insulting error.

    I want to raise, even though it’s off-topic that WPI has its annual report in pdf format online. I think it bears close scrutiny. However, glib advertising text aside, I was absolutely shocked that there is a quote from the Holocaust victim, Anne Frank, at the end, with a photo of clasped hands.

    As someone of Jewish background, I find that this is just crass opportunism at its worst, using the Holocaust for financial gain. It sends WPI over the ends of the earth to me and makes them lack any credibility, integrity or principles.

    I hope others object to this. There is NO comparison to Anne Frank and the millions of others who died in that catastrophe and the fundraising projects of a private organization!

    • kathy, i have been a bit off the grid recently, so i actually haven’t seen the annual report. but, i am very much with you on having very strong feelings about exploiting the Holocaust. as a german national, i feel extremely strongly about not diluting the horrors that happened by using inappropriate comparisons for political or financial gain or to get sympathy. there is never any excuse for that. NEVER!

  19. Kathy D. says:

    Thanks Jeannette. I thought you would agree with me on that.
    If you have time you might want to look at the WPI annual report. It’s in pdf format.
    It obviously cost scads of money to write, design and produce. It’s so well done, although I notice that form, not substance seems to be its essence. That lots of donors’ dollars, some very hard to come by, paid for this rather than for research is also annoying.
    Take a look at the budget though. It seems as if they lost donations since Judy Mikovits was fired, but had some type of business income.
    I hope that people object to the use of Anne Frank’s memory in this fundraising and crassly opportunistic piece.
    Thank you again and I hope you feel better soon and that your family is well. Look forward to reading your posts when you are back on the grid.

  20. Irene says:

    I am so stunned at the moment that nausea has hit me, along with a brick on the head, dizziness, tears, despair, and an endless list of symptoms, an endless list of emotions.  I can’t read anything, only words here and there are catching my attention, because I’m suddenly struck with rage and despair. Nothing sinks in suddenly.  I never allow myself cry anymore, but guess what? I’m crying now.  I’ve had this illness for 37 years.  I’m also basically bedridden now.  Finally I started a blog 6 weeks ago.   Please read this post I wrote just a few days ago. I am not naming names. But I am still traumatized by my experience of three (I believe) years ago. I know I should calm down before I send this off – to allow my emotions and symptoms to calm down to a reasonable level – but I’m just not capable of that at the moment. And I won’t be able to really take anything in, I’m sure, for at least a few days at the very least. But please read this. I’m afraid to send this – but I’m more afraid not to speak up.

  21. Kathy D. says:

    Jeannette, are you o.k.? Are you doing the Ampligen? Or something else? Is this the period in which you have to travel back and forth each week? Hope things are going well.

  22. Irene says:

    Kathy D. You read my blog and commented. Is there any way to talk to you? Do you have a blog? A fellow “bookie,” “book worm,” “bookoholic,” oh my!!! Read much of what you wrote here until brain started frying. There are so many things we have in common with this DD. I think the only exception is the medicine part, where large amounts affect me hardly at all, not the norm, I know. Wanted to know if you figured out which doctor I was talking about too 😉

    Thanks for visiting my blog and for your comment. I hope to hear from you. Perhaps I should make a list of the many things I’d like to cover! Hope you are doing well, or at least having a better day than your norm. Thanks. (and Jeannette, I hope you’re doing as well as you can possibly be!!!
    Irene (

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