Thoughts on the May 2013 CFSAC Meeting

I’ll have a lot more thoughts about this week’s CFSAC meeting in Washington, D.C. once I get a chance to watch the videos because I wasn’t well enough to take notes or attend (or closely follow) the entire meeting. But here are a few comments about some profound moments I witnessed that stuck in my head even without notes.

The Preparation

First, let me explain why I have been quite sick since Monday and, therefore, missed parts of the meeting. I signed up for in-person testimony at the CFSAC meeting on May 1st, 2013, on the same day the CFSAC mailing list notified folks that the Federal Register Notice was up online. (The notice itself is dated April 30th, 2013.) The deadline for registering was May 15th. Almost immediately after signing up for my in-person testimony, I received the following confirmation email:

From: CFSACMay2013@seamoncorporation.com

Subject: Registration Notification – Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting: Jeannette B.

Date: May 1, 2013 2:40:27 PM PDT

To: Jeannette.B@xxx

Jeannette B.:

Thank you for your registration.

We look forward to your attendance at the Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting being held May 22–23, 2013 at the Hubert H. Humphrey Building in Washington, DC.

Should you have any questions or require additional assistance, please contact CFSACMay2013@seamoncorporation.com.

According to the Federal Register Notice, speakers were to be notified by May 17th, 2013, a Friday, of their assigned speaking time. Moreover, the notice stated, “We will give priority to individuals who have not provided public comment within the previous year.” Since I had never spoken at CFSAC, I figured there would be no issue with my getting a speaking slot. When I didn’t hear anything by the end of business on the 17th, yet had heard that other patients who have testified within the last year and many times before did get an email notifying them of their time slot, I sent an message to the above CFSAC email address inquiring about my time slot. Here it was Friday night and I was going to leave on a $3,000 trip on Monday evening and yet did not know whether I would even get a chance to speak.

The next morning, Saturday, I received a reply in an unsigned email claiming that I had signed up for written testimony only, that the anonymous sender of the reply would check with the CFSAC support team to see if they could fit me in and let me know on Monday. I replied to that email as soon as I woke up on Saturday clarifying that it is absolutely not true that I only signed up for written testimony and that, in fact, I had indicated a preference for speaking on the first day during sign-up. I am 100% certain that I signed up for in-person testimony and the above email proves it. The language, “We look forward to your attendance at the Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting being held May 22–23, 2013 at the Hubert H. Humphrey Building in Washington, DC” can hardly be interpreted as “We look forward to reading your written testimony.” Having followed the sign-up instructions perfectly and having received an email basically confirming that I would get to speak, I was stunned. I waited for hours, but didn’t hear back.

Finally, I sent emails to Dr. Nancy Lee, designated federal officer at CFSAC, Dr. Gailen Marshall, chair of the committee and Dr. Howard Koh, assistant secretary for health asking that this be straightened out right away, as I could not possibly wait until Monday with packing given that I would get my Ampligen infusion that morning and then had to rest up for the remainder of the day before leaving that evening.  It would seem obvious to everybody who knows anything about ME that patients cannot wait with their packing for a several-days, across-country trip until the day of travel. I wasn’t going to make the exhausting and expensive trip without a confirmed speaking slot and I wasn’t going to waste precious energy on packing and unpacking should it turn out that I would not get to speak.

I received no reply from Dr. Lee or Dr. Koh. Dr. Marshall replied quite graciously on Sunday afternoon; apparently he had been away from his email and, in any event, the decision about who gets to speak falls, according to him, into Dr. Lee’s purview, but he was going to see what he could do. This gave me enough comfort to assume that I would be able to give my testimony in person, so that afternoon I started packing. Long story short, that was way too late and I ended up overdoing and woke up very sick with PENE (PEM) on Monday. I seriously considered canceling the trip, but was hoping that I would feel better on Tuesday or the following days, but that never happened. I had to ask friends to drive me to and from the airport because I was unable to do so myself. The whole trip and time spent in D.C. and even now still, I feel so much sicker than I did a week ago.

Bob Miller made this point in Bethesda last month and proof that he was right was staring me straight in the fact: No matter how often they tell us that they get it, they really have no clue. First of all, notifying participants on a Friday with no way of reaching the people who organize CFSAC, the Seamon Corporation, over the weekend regarding a meeting for which folks will leave on Monday or Tuesday is a recipe for disaster. Also, may I suggest that the confirmation email after sign-up in the future specifically spell out whether somebody is signed up for written testimony only, for testimony via phone or for testimony in person. That way, “misunderstandings” (i.e., mistakes) can be corrected in a timely manner without causing patients any bodily or financial harm. I did not appreciate being made to feel like they were doing me a favor fitting me. There was no apology for what I was put through by being forced to pack way too quickly for what my body can handle and for what ultimately caused a flare-up of my symptoms, merely a “sorry for the confusion.” Unfortunately, the mistake caused a lot more than confusion. It caused a deterioration of my health. There seemed to be no appreciation of, or regret over, that.

In CFSAC’s defense, the issue was ultimately resolved and I did get to speak. And the mistake seems to have been made by the Seamon Corporation, the company that the organization of the meeting is outsourced to. But hiring a third-party to do a government job doesn’t indemnify the government from liability for mistakes made by the third party

The Meeting

Again, these are just some highlights of the meeting for now:

Dr. Unger

Some people say that Dr. Unger would like to do more for us, but her hands are tied by her boss. I have no way of knowing whether that is true, but she did vote “yes” on one of the four Ampligen questions during the December FDA Advisory Committee. I do see her actively engaged in the conversation and often responding intelligently. Dr. Unger is not a case of not getting it, I don’t think. Having said that, she has a talent for saying things that are absolutely infuriating and/or classic government hot hair.

Two things come to mind from this last meeting. It was reported that she defended inappropriate pictures used for continuing medical education on ME purporting to portray ME patients, pictures that are misleading and outright harmful because they downplay the seriousness of the disease. You know the kind of pictures I am talking about: Employees with well-coiffed hair collapsed into their filing cabinet—whether or not from a hang-over or a serious neuro-immune disease is anybody’s guess, although the latter is unlikely given their well-groomed appearance. Dr. Unger’s rationale for using those types of pictures was said to be an attempt to portray a more positive side of the illness. Come again? What positive side? Have I missed out on the perks of having this crushing illness all these years?

Dr. Unger outdid herself with her comment that the CDC is not endorsing the Canadian case definition because physicians are frightened by its complexity. Wow! I nearly burst out laughing when I heard that. How did these poor physicians make it through medical school? And did Dr. Unger ever consider that getting the point across to medical doctors that ME is a very complex illness is actually a good thing?! It might keep them from harming patients by prescribing the wrong treatment, something that happens every day and damages people’s health irreparably. Maybe those “frightened” physicians are more likely to refer their very sick patients to a specialist who knows how to treat ME properly. And some may even learn a thing or two. Is that too straightforward of a concept for the CDC?

Dr. Maier

Dr. Maier crossed the border to surreal a couple of times. She kept insisting that the low level of NIH funding for the disease was merely due to the fact that not enough grants were applied for. Yet, we have heard from many (potential) investigators that their ME grant applications are almost always, and pretty much reliably, denied. Dr. Klimas gets one out of eight ME grants approved, which is in stark contrast to her Gulf War Syndrome research work, which gets funded at a much higher rate. And what kind of argument is this anyway: Let’s assume ME researchers submit for a bunch of ME grants that are not of high quality. Are they going to get more money just because of the higher volume of applications? I may be too exhausted from the trip, but this makes absolutely no sense to me.

Later, Dr. Maier delivered an extremely disingenuous “explanation” for why the NIH has not been funding any Ampligen studies: Because Ampligen is under patent and nobody but Hemispherx is legally in a position to study the drug. I felt like I was being talked to like a first-grader. Of course, Ampligen is patented. The patient community’s suggestion has been for the NIH to work with the sponsor, Hemispherx, or get its permission to do the FDA-required trial. Does Dr. Maier really think that the company would turn down NIH money if offered. Now, in all fairness, some strange things have come out of Hemispherx, so maybe it would, unlikely as it is. But how about making the funding of an Ampligen trial by the NIH an option given that the drug will likely disappear without it? That would be a good way of getting advocates of the NIH’s back. Just saying.

Maybe the second most disturbing moment of the meeting (the most disturbing one to be mentioned below) came when Dr. Maier, seemingly in response to something Dr. Fletcher had said (but I need to watch the recordings to make sure I am correct here) that it has been hard for her to be on the committee and that she is sick of being misquoted and then pretty much lost it by saying, “I have worked every freakin’ weekend since February.” I know a thing or two about working every “freakin” day of the year. But I would have never made that point to my clients because, frankly, that would have been unprofessional. Such self-pitying outburst in the face of unending patient suffering—suffering that doesn’t take a break for weekends, that lasts for weeks, months, years, decades—was plain grotesque.

“Chronic Fatigue”

On the second day, Eileen Holderman, the patient representative on the committee, made a very eloquent and passionate, yet professional plea to the committee to stop using the phrase “chronic fatigue,” a point I had made in my testimony a day earlier. It is bad enough to be labeled with “chronic fatigue syndrome,” but “chronic fatigue” is such a crushing insult. Eileen wondered out loud how diabetes patients would feel if one of the symptoms of diabetes, chronic thirst, was taken and turned into the disease name, “chronic thirst syndrome” despite having a number of other serious symptoms, maybe even amputeed limbs. This was a powerful analogy and yet the committee went on to use “chronic fatigue” for the rest of the day, as they had done before. Surreal.

Eileen Holderman

The most troublesome moment started when Dr. Marshall called Eileen “out of order” and Eileen disagreed. I missed the beginning of that interaction, so I don’t know exactly what was going on right then. But Eileen, visibly shook up, proceeded to talk about feeling threatened (together with two other committee members, one of whom is Dr. Fletcher) by lawyers and the designated federal officer (Dr. Lee) and afraid to speak out. She said she felt shut down whenever her viewpoint was inconvenient. It was quite obvious that Eileen was speaking from the heart and that a lot had gone on behind the scenes that we don’t know about. But Eileen did seem genuinely scared.

I don’t know Dr. Marshall, but he seems like a reasonable man who is often on our side. And in his defense, it was towards  the end of the meeting and he was rushing to get through the required agenda items. Yet, this exchange was probably not one of his prouder moments, especially since he didn’t call Dr. Maier out during her inappropriate, and clearly out of order, pity party.

Take-Away

I got the strong feeling that there are at least some members on the committee, e.g., Alaine Perry, Dr. Mary Ann Fletcher and Steve Krafchick, who are fighting for us, besides Eileen. I know patients are frustrated with CFSAC and how little it has accomplished over all these years. I imagine that some of the committee members are frustrated, too, by being completely ignored by Secretary Sebelius. So, I would caution against alienating everybody who is genuinely trying to help us. Let’s remember that Dr. Marshall voted for Ampligen all the way. That was huge. Let’s see how things shake out between him, Dr. Lee and Eileen. I hope whatever is going on can be solved amicably to everybody’s satisfaction. But if our patient advocate is being intimidated, then this committee has lost all its integrity.

PS (added May 26th):  The more I think about the fact that at least some of the committee members continued to use “chronic fatigue” after having been told by at least two patients during the meeting how derogatory and harmful it is, the more it makes me wonder what the point of it all is. If we can’t even get “our” committee to “go the extra mile” and add on one little word, “syndrome,” then how much hope is there that they are really interested in helping us? How hard is it to use the full name after having just been told that it is a matter of respect and integrity and responsibility?

And here is a radical idea: What if all of our clinician and research experts just started using the term “ME,” as recommended in the recent International Consensus Criteria supported by an “International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate” representing “thirteen countries,”  “approximately 400 years of both clinical and teaching experience” as well “hundreds of peer-reviewed publications.” Those folks have diagnosed or treated approximately 50,000 patients with ME!

If they (and we) all just started using it, then the media would follow suit and the many non-experts would as well if for no other reasons than the fact that we live in the age of political correctness. We could solve the “name debate” almost over night. This is how powerful it would be if CFSAC and our experts were putting a little more effort into being disciplined when it comes to the name. This is not rocket science. Imagine how much credibility this patient population could gain almost instantaneously?! Given how much harm the name “CFS” has caused, it is hard to believe that all these smart folks would fail to recognize their responsibility here. Sometimes, somebody has to stick their neck out even if it’s not comfortable. But it’s the right thing to do.

The same really applies to the case definition. We have two sophisticated case definitions, the CCC and the ICC, and yet everybody seems to be insisting on the much more harmful Fukuda or Oxford definitions while fully aware of how much this holds us back and how much real harm it does. All Dr. Unger seems concerned about is to protect physicians from complexity. I think in that spirit, we should stop doing open heart or brain surgeries because, surely, that is very taxing on physicians as well. This all just so grotesque.

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38 Responses to Thoughts on the May 2013 CFSAC Meeting

  1. Samuel Wales says:

    Thank you.

    Those meetings are completely pointless and insulting as usual — except for one thing: they provide yet more overwhelming documentary evidence.

    Which is why people have to keep going. The false advocacy organizations would happily take over if nobody else went.

    • Jeannette says:

      nobody will be able to say they didn’t know. no more deniability after all these years of us telling them.

      • Teri says:

        I watched the webinar, and feel the same way. The breakdown within the advisory committee left me with the feeling that we are never going to get anywhere. I agree the integrity of some, not all, is more than questionable. I can’t believe after a decade their still arguing about whos definition to use, and what about Dr. Unger not wanting the second stress test? Thats the whole point, the second day stress test is what tells the ugly reality of this disease, and the complete devastation of it. Why would she be against such an important tool? It doesn’t make sense, and I too felt offended when the NIH member said “She was tired of people telling her shes not doing her job”, with all due respect ITS BEEN TEN YEARS, and your still arguing about the definition. How can we turn this around? I don’t know that we can.

  2. Fred says:

    Jeannette:
    This is Fred and a first time reader. Want to thank you for your well thought views and observations. I look forward to visiting your site in the future and adding to my growing knowledge of this disease as well as further fuel for my MECIFS patient advocacy. Audrey, you and the “N. Nevada Tribe” have all been an inspiration. FD

    • Jeannette says:

      everybody, this is fred who, with his wife audrey, have made it possible for me to go to CFSAC by driving me to and from the reno airport. because i was too sick after the stress of last weekend to do so myself. i really can’t thank you enough.

      yes, the NV tribe is quite something, huh 😉

      and thanks for reading!

  3. Laurel says:

    You did a great job of reporting all the high (and low) points of the meeting. There were a number of times that I was yelling at my computer screen, and others when I was cheering on someone who was not letting them gloss over something important. I’m not deluding myself that this will change anything, but at least it’s on the public record now.
    Thanks for representing those of us who weren’t able to go, Jeannette.

  4. Kathy D. says:

    Gosh, you are amazing — to go through this trip, pay a lot of money to do so and then have to sit through this infuriating, seemingly pointless event. While reading your description, I was so outraged that I almost couldn’t respond. I was sputtering at the computer screen.
    Your dedication is admirable. And that you put your own health in jeopardy is quite remarkable — and you had to pay for this on top of it all!
    Just what are we all to think of this “show” by the CFSAC? Is this all a performance on their part, to show that they had a meeting? Is it to diffuse the pressure they are under? To hold this discussion and then push the whole issue under the rug once again? To continue to do virtually nothing?
    I just don’t get it. Obviously at this point, the government doesn’t want to fund research on ME/CFS. Many researchers have submitted grant proposals. Few are funded. They don’t take the disease seriously and want to give minimal funding. Isn’t this a repetition of scenarios with other diseases and research funding?
    I really admire your determination and hard work on all this. But is it worth your health and financial outlay?
    What else can we do? I wish we had the energy to emulate ACT-UP and carry out activities, like sit-ins and protests and whatever is required. Even informational leafletting, picketing with signs, making a lot of noise.
    I thank you for all you’ve done and are doing and wish you a quick recovery.
    But what is our strategy to cut through the disinterest and misinformation? Beats me.

    • Jeannette says:

      it’s all so incredibly frustrating, kathy. i feel like i want to reserve my judgment about CFSAC for a little longer because i have, in general, a sense that maybe the tide is turning and i want to see if CFSAC can be catalyst somehow. call me naive; i just don’t know. but if they can recommend using the ICC or CCC, that would be huge and would put some pressure on unger and the CDC to follow suit. if they can convince the CDC to include the 2-day VO2 max test, again, that would be a big step forward. and if they can finally get the discipline to stop saying “chronic fatigue,” that would be at least a start. how hard is that?

      i struggle with guilt putting my health on the line for these things because i do have a family, but ed is supporting me all the way. financially, we’ll do it as long as we can and for now, it’s fine. (ironically, we can’t even deduct this from our taxes.)

      it’s a constant struggle to stay sane in this environment. i enjoy the gratifying feeling of contributing a teeny amount to the cause, but it gets so frustrating at times that i need frequent breaks and have often considered throwing in the towel altogether. so far, i’ve always managed to get back into it. it’s literally one day at a time, as it is one infusion at a time with ampligen these days.

      • Teri says:

        Jeannette can I ask how long you have been on Ampligen? I know that there are many organizations working on ME/CFS right now, and that buzz is good, and probably our only hope. However, what seemed to be a complete breakdown within the CFS Advisory Committee was uncomfortable. Their actions speak so loud, that I can’t hear them anymore, I dont need lip service, I need action! It disturbs me that any of the committee members feels threatened, and worse, why are they being threatened?

        • Jeannette says:

          i’ve been on ampligen for 13 months and am hoping for many more months and years.

          • Teri says:

            Thirteen months twice a week? How are you feeling? Can you tell me a percentage of how much better your feeling, sleep, hours able to work? Ect. Been thinking about Ampligen for over a year, but don’t know if it is enough without continuous treatment. I have been on 2100 mg of BHT daily, (Antiviral), and it has helped me tremendously, in fact I had an eight week Lazerus effect, I was 100% back, then I crashed, but not as bad, not as long. I say BHT is my AZT.

            • it’s hard to explain what the improvements are, but the biggest difference is that i get away with more and recover more quickly. i recently have been through two moves and two DC trips. i am still recovering from the last trip, but am hopeful that ampligen will speed up recovery dramatically. it’s not a cure, so crashes do happen–from overdoing or from infections or stress. my sleep has been quite awful, mostly from being more physically active because of the moves than i should. so, exercise is still a big no no for me. i stayed one block from the White House in DC and i debated long and hard whether i should go and see it. in the end i did and it was a profound experience for me, but that gives you an idea of where i am at in terms of exercise.

              i am not able to work. i hardly pull off the little bit of writing i do and the bit of advocacy work, which i am free to time entirely when i feel up to it. i could never promise an employer that i’d be able to show up for work at a certain time and be reliable. plus, my job is healing; it’s a full-time job. basically, what ampligen allows me is to care for myself (like shopping, laundry, etc.) and to fly home every other week (i can drive to the airport myself and i often don’t need a wheelchair at the airport) to spend more quality time with my family than i had been able to before. instead of being in bed or on the couch all day, i can have meaningful interactions with my daughter now. but there is still no way i could take care of her for a whole day all by myself. not even half a day. … the improvements for me are huge, but i’ll never be healthy again and i am far from 100%.

              i am hesitant to put a percentage on things because (1) i have a big range and (2) when you talk about percentages, you first have to establish what they mean. i find that people throw percentages around and their meaning vary vastly. e.g., somebody who claims to be at 30% traveled to the Bethesda meeting last month from the Bay Area. That doesn’t add up to me, but it’s subjective. and since it can be misleading, I avoid percentages like the plague.

              ampligen is a huge commitment, financially and location-wise. but it has been so worth it to me. i look at least 5 years younger and my envelope expanded in a really meaningful way.

              oh, another thing i noticed is that i am less sensitive to chemicals, fragrances, etc.

              i had never heard of BHT. very intriguing. i am very glad it works that well for you.

              • Teri says:

                Thank you for the very detailed answer, I understand about the % perception. I have been thinking about Ampligen for 18 months, in fact 15 months ago I was ready to go to Carolina to get Ampligen, had got my packet of all the paper work, and was dreading the energy it was going to take to fill it out. In the mean time, I thought let me try a higher dose of BHT, then miracle!!! 100% recovery (Yes I used %), that lasted about 8 weeks, I had full recovery every morning, my sleep decreased to a normal eight hours, started dropping weight, BUILT a fence, helped my daughter move into an UPSTAIRS apartment, its like my body had skipped over ten years of illness, then I crashed, not for long, and not as bad. After that experience I will never believe we cant have a full recovery from this illness, regardless of how long we have had it, because I had it for a short period of time. BHT has made my life so much better, but not well. My recovery is faster, and much fewer full crashes. What reasearch I have done on BHT says it was created for AIDS, but AZT came along first, but given BHT had shown great antiviral properties, they tried to find a use, but it ended up getting FDA approval as a preservative, for cosmetics, oils, fuel, it keeps oil from going rancid. Its in most items in our homes, of course not at the levels im taking by mouth. I don’t know that Ampligen could bring me any further than BHT has though. What was it about BHT? Is it that BHT held my viruses at bay, therefore giving my immune system a break to tackle something else? I have tried to wean off of BHT, and I can feel the viruses crawling in my neck, back, area, and I just start sinking back into the abyss, so it would be hard for me to ever stop. Also just fyi, no colds, flu, anymore. Sorry so long!! 🙂

                • fascinating, tery. for what it’s worth, my advice is to stick with a winner. i agree, we’ll never be healthy again. it’s all just about grades of improved quality of life. it sounds like BHT works very well for you and to be honest, i am not sure ampligen could take you further. plus, not having to move or getting stuck at least twice a week or being very restricted with travel is a huge plus.

                  how much is BHT? what kind of doctor prescribes it for you? what other kinds of patients is it used for? (thinking ahead in case ampligen goes under, which is pretty darn likely).

                  • Teri says:

                    BHT is over the counter, and cheap,, less than $40.00 month for me. Pearson and Shaw have done extensive reasearch on BHT, and the antiviral properties mostly against HERPES viruses. Some people claim its healed them of herpes, most me/cfs patients have HHV6, along with other viruses. I take 2100 mg a day. Everything doesn’t work for all, but this keeps me off the couch most days, sitting up instead of lying down makes me feel like I have a little better quality of life.

      • justinreilly says:

        They should adopt the system that someone once mentioned that they did at a conference in Canada where every time someone said CF they had to donate a “looney” (some money coin, maybe a dollar) to ME research.

        • i LIKE it! it’s a great idea! because it’s playful, but makes the point very well. and it would get very expensive for those folks quickly, so they’d get the message fast, i bet. trick is to get them to agree to it.

          if i get a chance to suggest it, i will give you credit for it, justin, i promise.

          ok, i’ll try to unwind a bit now. so, probably won’t reply to anything else tonight. nice chatting!

  5. That is disgusting that they kept saying CF after Eileen bravely spoke. I could not agree with her more.

    Thank you Jeannette for your valuable advocacy. I am sorry your health was made worse by them. My take on it, fwiw, is the money and energy that people spend traveling long distances to testify at CFSAC is heroic and I can not thank everyone who does enough. That said, I think those resources would be better spent encouraging local patients to attend (for example by giving small stipends to local support group and protest organizers and support group patients to attend- say $30 per person per day) and making our testimony by phone, or DVD, if that’s been allowed now.

    LOBBYING!
    The left over money could be used for lobbying- meeting with our congress people and making donations to their campaigns over time. What we have been doing has been noble, but it hasn’t created change quickly enough. Time to go to the bosses of CDC and NIH- the President and Congress and lobby in earnest, to the extent we are able.

  6. Kathy D. says:

    In England a few weeks ago, a good-sized grouping had a “lie-in” in front of a huge landmark building — I forget which one. But it looked good from photos I saw. Wish we could do this and become more visible, not the “invisible” ill group at home.

    • Jeannette says:

      we’ll need to do something, that much is sure. the problem is so many people can’t travel and even the local people are too sick or not plugged in enough. we didn’t have a great turn-out at either the Ampligen advisory committee meeting in December or at the FDA stakeholder meeting last month. And that was despite the offer of busses for locals to be driven to the December meeting.

      • justinreilly says:

        Jeannette,

        Good point. None of the patients I have first met in person (as opposed to first meeting on the interwebs), with one exception, have been at all into the politics or making their voice heard.

        do you know who offered to have busses available?

        About a year ago I contacted the only local DC advocate I knew of and asked her if she could help organize people to get to CFSAC and she said her health was no where good enough to try that. So I agree there are big challenges getting people, especially locals interested in in person participation.

        • the busses were offered by HEB. i know they have a financial interest here, but we patients have much more at stake re having ampligen approved and i would say that even if i wasn’t on ampligen. and yet, not many people showed up. we are just so darn sick.

  7. justinreilly says:

    I also agree with you guys that the protest in London was great and that it is so hard to do those sort of things because of our severe average disability. I hope we can somehow pull off more of them, though, as in person protests with a visual message like the “all fall down” protest are extremely helpful for our cause.

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  9. Tara W says:

    As one of the many silent souls out there reading from our couches or our beds, just wanted to take a moment to send gratitude for the work that you and other advocates do (often at such high personal cost). Appreciate the summaries too.

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  11. Kathy D. says:

    Our thanks to Jeanette for all you are doing for us!
    Now I’m wondering if we can use the tools we now have on the Internet to do what many of us can’t do physically. We can use our skills or ask friends who have them: Perhaps we can send around petitions to get signatures using some list-serves. Or start out using individual’s own email address book, then move on. Make demands. Connect to Facebook, Twitter, Tumblr, etc. Can we do this? Who here can do this? I can consult a friend or a few on what to do.
    We just did a massive email campaign for something; now there’s a day to phone-in the White House and two other offices and focus on this day. Can we do this? A set day to phone the White House, the CDC, the FDA, — just organize 800s of calls on a certain date! We have to shake up these people. They want to keep pushing us under the rug. And we have to use bold action, use the Internet, use guerrilla theatre — hey it worked in the 1950s.

  12. Jill says:

    This is a CFS committee. They had no right to take over ME or create ME/CFS, without explanation or public discussion. A name change to ME will not help as they will still study fatigue. Focusing on CFS and chronic fatigue is really a waste of time. Chronic fatigue means tired all the time. Chronic fatigue syndrome means tired all the time and I’m making a big deal about it. These ME/CFS groups have their own agenda but do not represent ME patients, but have tried to pretend to.

    CDC does not do ME research. They research CFS. Constant misrepresentation and mislabeling and misusing terms.

    • Teri says:

      Chronic Fatigue is a symptom not an illness, you can have chronic fatigue with AIDS, cancer, renal failure, congestive heart failure, pretty much any chronic illness. They took this horrible disease that we have and named it after a symptom, that was the intial slap in the face, I mean can you think of any other disease that has a “Symptom” as the name of the disease? As far as ME/CFS being in the same group, I think theres to many similarities to divide right now, and instead of trying to divide or fight it we should join together for strengh. I know one thing for sure, we are going to have to make a lot more noise, this is stagnant where the FDA is concerned, and after Kathlene Sibilias statement this last week regarding the ten year old girl needing a lung transplant, ” Some Live and Some Die”, we are not dealing with a compassionate person.

  13. Anonymous says:

    Dear Jeanette, i have been following your brave fight a while, beiing myself 20% on Bell scale since 5 years and with heavy CFs since 30. (A cancer passed by too, but CFS weakened me much more:/).
    Or rather – i WAS 20% Bell scale.

    NOW, after only 4 months with wild-green-smoothies, green juices, sprouts algues i am already at 40% and symptoms have left me, which i had since my teens (i am 50 now:):
    – very short breath
    – light-sensitivity
    – heavy PMS
    – gum-bleeding
    – hay-fever and some allergies since past 5 years
    ..all this left within 3 months of 100% raw-vegan.
    Now i walk 25 minutes quick instead of 5 minutes – i used to be slower then 80-year olds with rollato, now i walk my old speed: pretty fast:).
    Even mind/memory/conceptual + associative thinking etc. comes back.

    So, please you CFS-Co-fellows all out there,CHECK OUT HHI:
    HIPPOCRTATES HEALTH INSTITUTE, Dr. BRIAN CLEMENT book “Life-Force”,+” cook”book of his wife; Florida. They do from all raw-gurus and so on the thing thats most serious based on healing capcities..

    They have a 100% quote of reversing CFS/ME. He told mep ersonally when i asked him some details for CFS here on Germany lastn ight. I absolutely beleive it. They make follow-ups and bloodtest like crazy to prove their success..:))
    And since i am doing it, all here at my home (germany:), and have not even started to include the specific detoxactvities and tools and the immunsystem-treatments which are specific at HHI for CFS (but can also be done elsewhere) – I only did the diet so far, starting with lovely “green smoothies” with very little fruit and LOTS of green leaves:)) and wheatgrasjuice in month 3 – i can only say w o w.
    P l e a s e, check it out and start right away with am Mixer or Juicer, salad, dandeloion and a half apple or banana and/or avocado, if you like creamy stuff:)) for breakfast and n o coffee or salts or fats or sugars. Just try and watch effect on energy for one week. Then go on :))

    (What they do, if they heal not CFS is, that they H E A L the W O R S T CANCER CASES andand..: people close to death, walk of fine.
    Since 30 years, or rather: 50 years.
    No wonder, medical industry doesn’t like it: its just to cheap and no patents are possible.)
    Please, check it out and go raw with little fruit and l o t s of green leaves (juiced or finely blended to avoid zelluloseproblems, thats the secret i ngetting the incredible beneficial clorophyll and oxygene-stuff..
    With all best wishes from Germany,
    Alex

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