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Attention DC area posters!

Discussion in 'Action Alerts and Advocacy' started by mezombie, Oct 23, 2009.

  1. mezombie

    mezombie Senior Member

    East Coast city, USA
    Fred Friedberg, president of the IACFS/ME (an international organization of ME/CFS physicians and researchers) put out this plea today:

    What we need is strong attendance at the CFSAC meeting. If we pack the house (we have to fill only 50 seats), that will show that we care about this illness and support all appropriate biomedical research and public policy initiatives that legitimize CFS. If you can attend for even 2 hours that would be helpful.

    This message actually got through to me. I may make the effort to attend for at least a short while. I hope others who are in a position to do so will try to do the same. Reviewing the meeting agenda ( is helping me decide when it would be best (giving my limited energy) to attend.

    Here is the rest of Friedberg's post:


    Important Meeting of the CFS Advisory Committee

    on Oct. 29-30 in Washington, DC

    The CFS Advisory Committee makes recommendations to the Secretary of Health and Human Services regarding government-based CFS research, funding and programs. This is a critical meeting because the future of $25 million in public funding for CFS research at the Centers for Disease Control will be discussed. IACFS/ME wants these funds to be spent on cutting edge biomedical research leading to objective diagnosis and treatment of CFS. We also want CFS to become a public health priority so that issues of stigma and the absence of good medical care are addressed.

    The new CFS retroviral study on XMRV in the top tier journal Science shows what can be done to advance the medical research. But this is only a first step. Without follow-up, the momentum we now have will be lost. Only with broad based support from the professional and patient communities will we have a voice in how federal funds for CFS research are spent.

    What we need is strong attendance at the CFSAC meeting. If we pack the house (we have to fill only 50 seats), that will show that we care about this illness and support all appropriate biomedical research and public policy initiatives that legitimize CFS. If you can attend for even 2 hours that would be helpful.

    For an informative Q and A about the study, click on the link below:

    Fred Friedberg, PhD
  2. Dolphin

    Dolphin Senior Member

    Thanks Susan and Marie for doing this - it's much appreciated.

    We particularly need to make this difficult for the CDC and Reeves - they have been going in the wrong direction with their research in recent years. And this could lead to all sorts of problems e.g. bad information going out to doctors in education programs, etc. At the moment, I think their info in their education programs is more neutral - probably better than nothing. But I think they've been taken in by all the hype from British and Dutch psychiatrists and psychologists about GET and CBT based on GET leading to recovery - Bill Reeves even said we don't know for what percentage CBT/GET lead to recovery in the last meeting. Most people would say virtually none except British and Dutch psychiatrists and psychologists!
  3. Ruth

    Ruth Member

    Madison, WI
    Hi Susan,

    I think I read somewhere that you are staying at the L'Enfant Plaza Hotel? I looked up its location and it looks like an excellent location and a very good price for the location.

    My husband and I are staying at a Fairfield out near Dulles (Have some Marriott points and need to stretch them and it was the most reasonable hotel) and taking the 5A bus (costs only $3) into DC and its last stop is L'Enfant Plaza and it looks like we could walk from there if we allow plenty of time for my slow walking. It is about 5-6 DC blocks from your hotel to the HHS building on Independence, or a bit less than the length of the Mall from the Washington Monument to the Capitol and I think I could walk that slowly in about 20-30 minutes. I'm OK as long as I don't get my heart rate up. Taxis from L'Enfant Plaza are another option since they shouldn't cost much.

    [Susan: I just stuck a few extra details in to the above paragraph in case it helps anyone else reading this. I know you don't need them since you already have your hotel.]

    Would you want any of us to try to meet you briefly at your hotel beforehand, either the evening before or the morning before? Here is my cell: six oh eight, two three nine, eight seven eight nine. Anyone else on the forum is welcome to call me about something relevant, but I tried to keep it from being picked up by those nasty programs that are creating lists. Similarly you can contact me through Ruth [hanging-out-on] disguise since using "at" has become too obvious and is being used by those programs)

    I would be happy to hear from anyone planning to attend who wants to get together outside of the meetings. We are driving from Wisconsin--I should say, my dear husband is driving and I am napping--and I'm not sure how early we will get in on Wednesday. I hope by early evening and so we can drive into DC and check things out to make sure there isn't some big construction project just where I am planning to be slowly walking. I am trying not to get too excited about all this so I don't crash and not be able to go. If I'm OK, we will leave Tuesday evening after Paul gets done teaching and stay in South Bend, IN, and then travel all day Wednesday. My cell should work most of the way but it would be better to talk ahead of time this weekend when I have free cell minutes or after 7 pm on weekdays.

    What amazing action we are finally seeing. I have had this for about 25 years, after I got really sick while working on a PhD in computer science (which I was never able to finish although I got awfully close). After a few years I got up to about a 6 on Dr. Lerner's scale [which I just learned about--see Cort's blog of 10/21 if you haven't already] and was able to work as a software developer for quite a few years, but a year ago I did some "power walking" as someone--was it you ?--called it, and totally relapsed to what I now realize would be a 2 on his scale and then as I tried to recover ended up as a 0-1 for quite a few months last winter. Now I'm up to about 4-5.

    I have learned so much from this forum. I signed up a couple of months ago but only started reading it a couple of weeks ago. Now I realize why my heart rate is so predictive of whether I will crash. I think I will start a new thread on that as soon as I can. Well this has gotten a bit long and maybe I should have sent it as a private message, but I wanted to encourage anyone else who might want to get together in DC to contact me too.

    We have much to be grateful for in the efforts of Cort and the WPI and Drs. Lerner, Bell, Friedland, Klimas and quite a number of others. Let's hope we can get the deadwood [Dr. R, etc--sounds a bit like a Kafka novel]out of the way of progress. Then we can celebrate (as long as we don't overdo it!) :)
    Looking forward to meeting you.
  4. Dolphin

    Dolphin Senior Member

    Well done Ruth (and to your husband too).

    Very sorry to hear about the missed PhD that you nearly got.

    Don't forget folks that one can also PM (private message) individuals by clicking on their name if you are nervous about giving out too many details. [Aside: Although if everyone does this, it might be hard to get in contact so it might be useful for other people to say they're going even if they don't want to post any more details, if people want to have big meet-ups. Meet-ups would be especially useful if any signs or stickers or the like are being handed out. Anyway, just ignore my waffling and do your own thing!]
  5. Ruth

    Ruth Member

    Madison, WI
    DC meeting

    Hi Tomk: thanks for the encouragement and condolences (for the dead PhD)and tips. We wish you were able to attend and I know you wish that too. I was amazed when my husband offered to drive us there and now I am really excited about it. Like Susan, I feel that I need to go to represent those who wish they could go and can't. I didn't even try to get a space to talk. Right now I get confused when addressing an audience. And to think I have addressed conference audiences of hundreds with no problem in the past. You refer to rambling. Right now that is MY specialty.
  6. Ruth

    Ruth Member

    Madison, WI
    will bring scissors to cut ribbon

    Hi Susan:

    I'll bring the scissors. I don't know if I'll have a ribbon before I get there, but you should be able to recognize me from my picture which I posted a day or so ago just so you would recognize me, but then I was too tired to write the message until today. It's neat the way, once I uploaded the picture, that it appears with all my posts including the ones I did before I uploaded the picture. I really like this opensource forum package that Cort is using and think I'll put it on my website, if I ever am able to get it together.

    I was going to upload a picture of me that I like better that was taken a couple of years ago, but I was afraid you wouldn't recognize me. So I used a picture from a couple months ago so that I should still look like that when I get there, unless I fall on my face between now and then. (unfortunately a possibility, so I'll hold the scissors facing down...:rolleyes: )

    I think 8 am in the lobby should be fine right now. If I find out otherwise, I'll let you know. Like if folks want to meet outside the building at a certain time before 9am. I think I'll bring my rolly walker with a seat on it. We can take turns using it if you like. I don't need it all the time, but when I do.... I wonder what we should plan to do for lunch. Does anyone know what is available? Is there a cafeteria in the building? Should we bring our lunch? I think I remember a cafeteria in a museum not far away.

    Well I need to retire right now, so I can live to fight another day, or something like that.
  7. Dolphin

    Dolphin Senior Member

    Sorry to hear that.

    My own health was advice to exercise (and following it).

    But unlike drugs, adverse reactions to exercise aren't recorded anywhere. And it's such a seductive idea for doctors, etc to hear that what we need to do is keep trying to exercise more that about the only people who "get it" are people with the illness and some of the people they live with.
  8. Dolphin

    Dolphin Senior Member

    By which bits? The plan seems similar to their draft plan, with a reference to HHV6 and XMRV thrown in (but I haven't done a thorough compare and contrast).
  9. Dolphin

    Dolphin Senior Member

    I think you're right not to.

    Their version of the Fukuda definition (the empirical criteria (Reeves 2005)) is what they have used for all the studies in recent years. There is no mention they are changing this. There is a workshop in 2010 but they might just invite "yes" people who will agree with them. One of the things I'd like is that other groups would get to select individuals for these international workshops.

    There are worse things than that e.g. 57% have current psychopathology, 89% have lifetime psychopathology.

    I think you could be right.
    Also remember that the education programs are very likely to promote GET and CBT based on GET.
    "Evidence-based" in the CFS world usually means GET and CBT based on GET as there are not enough RCTs for other interventions.
  10. Dolphin

    Dolphin Senior Member

    Here is some information on Peter White's views in case anyone hasn't seen it.

    If you have sensitivies to chemicals, make sure to look at part (viii) including the references.

    This is a message I sent to Co-Cure around 2 years ago. It shows where Peter White comes from. Imagine having consensus workshops with him involved! That looks like what the CDC want to do. It appears, they could only go one way.


    I previously highlighted some points made by the Association of
    British Neurologists during the NICE process: i.e.

    and highlighted that one can read further submissions at:

    "Chronic fatigue syndrome / Myalgic encephalomyelitis: stakeholders
    comments and GDG responses":
    [AOL: <a href="">Here</a>]

    However this is a huge mass of information and going back and
    comparing it to the original is a lot of work. So I imagine most
    people will not do it.

    So I thought I'd highlight some comments by St Bartholomew's Hospital
    Chronic Fatigue Services. I have done this on a couple of UK lists
    and people have been fascinated by what was said.

    St Bartholomew's Hospital is often shortened to Barts - this is not a
    derogatory abbreviation.

    The Barts service is led by the psychiatrist, Prof. Peter White.
    Peter White is a major person in the CFS world. He has done much work
    in the US in recent years including with the CDC so I thought people
    around the world might be interested in some of the points they made.

    I have not put comments so people can judge the comments themselves.


    Tom Kindlon


    (i) On Disability aids and equipment:

    [TK: A blue badge is a disabled parking badge to allow somebody park
    in a disabled parking space]

    Draft text: For adults and children with moderate or severe symptoms,
    provision of equipment and adaptations (for example, a wheelchair,
    blue badge or stairlift) to allow individuals to improve their
    independence and quality of life should be considered, if
    appropriate and as part of an overall management plan.

    SH St Bartholomew's Hospital Chronic Fatigue Services
    69 FULL 183
    "…equipment and adaptations (for
    example, a wheelchair, blue badge or
    We disagree with this recommendation.
    Why should someone who is only
    moderately disabled require any such
    equipment? Where is the warning about
    dependence being encouraged and
    expectation of recovery being damaged
    by the message that is given in this
    intervention? We are in no doubt that it
    is a powerful message for a therapist of
    any sort to provide such aids. Our view
    is that such aids should only be
    considered by a multi-disciplinary
    therapeutic team as a whole, and
    usually in the context of providing a
    temporary means for a patient to
    ncrease their activity levels. An
    example would be providing a wheelchair
    for a bed-bound patient as part of
    their active rehabilitation programme. In
    our opinion, such aids should never be
    seen as a permanent solution to
    disability in this illness.

    We have recommended such
    equipment only if appropriate, and
    as part of an overall management
    plan and as an aid to independence.

    Another quote along these lines:
    In reply to (Draft NICE text): For adults and children with moderate or severe symptoms,
    provision of equipment and adaptations (for example, a wheelchair,
    blue badge or stairlift) to allow individuals to improve their
    independence and quality of life should be considered, if
    appropriate and as part of an overall management plan.

    Barts wrote:
    Equipment and aids may hinder
    recovery as much as help it, and their
    prescription needs to consider both
    outcomes. We believe disability aids
    can help a patient towards recovery if
    their use encourages a widening and
    increase in their own activities, on a
    temporary basis, as a means of
    supporting a rehabilitation
    programme. They should rarely if
    ever be used for patients with only
    moderate disabilities.


    (ii) On making information available on audio tape:

    SH St Bartholomew's Hospital Chronic Fatigue Services
    91 FULL 260 13

    Why should anyone with concentration difficulties find it easier to
    use audiovisual technology, which by your implication does not involve
    reading, more than reading itself (from either a book or computer
    screen)? Would it not be more effective to negotiate a simple graded
    programme of reading to help such a patient improve their reading
    ability, along with helping to improve their cognitive capacity
    through improving sleep and mood? What might be effective advice is to
    encourage the use of voice-activated software in someone who finds
    typing using a keyboard physical tiring, and needs to meet a deadline
    in their job or studies.

    Noted and removed – we consider that the text on including cognitive
    activities addresses these points.


    (iii) On Weight loss in CFS/ME

    SH St Bartholomew's Hospital Chronic Fatigue Services
    88 FULL 248

    "Adults or children who experience
    severe weight loss should be referred
    to a dietitian for assessment, advice
    and nutritional support, which in
    extreme cases may include tube
    This is alarming and arguably negligent
    advice, which we strongly condemn.
    Any patient who experiences severe
    weight loss should be referred for
    appropriate assessment, not by a
    dietician alone, but by an appropriate
    specialist doctor (gastro-enterologist or
    psychiatrist) so a diagnosis can be
    made. We do not know of any reliable
    or replicated evidence that severe
    weight loss, in deed any weight loss at
    all, is a part of CFS/ME. Whereas we
    are aware of patients referred to our
    service with a diagnostic label of
    CFS/ME who on assessment have an
    alternative diagnosis, most commonly
    anorexia nervosa (sometimes
    presenting atypically without a body
    image disorder, which is well described
    in the anorexia nervosa literature), but,
    on occasion, malabsorption.

    This recommendation has been


    (iv) On Neuropathetic pain and Gabapentin:

    Draft Text:
    Gabapentin: The GDG noted that the wider survey was supportive of
    gabapentin in severe CFS/ME sufferers. The GDG was uncertain why
    this was the case. Because of its side effects, the GDG did not
    think that it should be used for mild pain but there will be certain
    individual cases when it might be considered despite a relatively
    high side-effect profile. The GDG decided not to make a positive or
    negative recommendation.

    SH St Bartholomew's Hospital Chronic Fatigue Services
    87 FULL 233 1

    The GDG noted the survey support of
    the use of gabapentin in CFS/ME.
    However this drug is licensed for
    neuropathic pain. There is no evidence
    that patients with CFS/ME have a
    neuropathy and we would not
    recommend the use of this drug,
    particularly as one of its significant side
    effects is sedation, without empirical
    evidence for its support, which is
    currently lacking. It would be surprising
    if NICE gave guidance based on
    anecdotal evidence, an inaccurate
    indication, for a drug, which has
    significant adverse effects.

    NICE Response:
    Noted and we have recommended
    that people should be referred for
    specialist pain management if

    (v) Bowel symptoms and CFS/ME:

    Draft text: Prescribing of gut anti-spasmodics (such as mebeverine,
    alverine, and peppermint oil) should be considered for adults and
    children with bowel symptoms, such as cramp or bloating.

    SH St Bartholomew's Hospital Chronic Fatigue Services
    85 FULL 229
    "..gut anti-spasmodics.." are not
    treatments of CFS/ME since bowel
    symptoms are not part of CFS/ME. You
    should make it explicit that this
    treatment might be indicated for the
    treatment of IBS, if present comorbidly.
    Alternatively, and perhaps more wisely,
    you could suggest that IBS, if present,
    should be treated in the light of the best
    available evidence, and refer readers to
    appropriate guidance, which may or
    may not include considering
    antispasmodics as the treatment of
    choice for "bloating", although we would
    doubt it. You do mention IBS on page
    233, line 12.

    We have revised this
    recommendation and referred to the
    NICE IBS guideline – currently in

    (vi) On Drug Intolerance and CFS/ME:

    Draft text: Adults and children with CFS/ME may experience greater
    intolerance and more severe adverse/side effects from drug
    treatment. Where appropriate, drug treatment used for symptom
    control should therefore be initiated at a lower dose than in usual
    clinical practice, and should be increased gradually.

    SH St Bartholomew's Hospital Chronic FatigueServices
    84 FULL 229
    We are not aware of any reliable and
    replicated evidence to support the
    statement that patients with CFS/ME
    are more intolerant or have more
    severe adverse effects; and "more
    intolerant" than whom? We do not
    agree that drug treatment should be
    initiated at lower dose than in usual
    clinical practice. This possible myth is
    repeated within the guideline at various
    points, and is important since it may
    make doctors more likely to prescribe
    sub-therapeutic doses. If you are going
    to keep this included, you should make
    sure that the anecdotal level of
    evidence for this is explicitly stated. We
    would suggest changing to "..drug
    treatment at lower doses may be


    (vii) On Recovery times:

    Draft text: When planning a programme of GET the healthcare
    professional should:
    • discuss with the patient ultimate goals with the patient that are
    important and relevant to them. This may be, for example a 2 x 15
    minutes daily brisk walk to the shop, a return to previous active
    hobby such as cycling or gardening, or, if more severely affected,
    sitting up in bed to eat a meal.
    • recognise that it may take weeks, months, or even years to achieve
    goals, and it is essential that the therapy
    structure takes this pace of progress into account.

    SH St Bartholomew's Hospital Chronic Fatigue Services
    75 FULL 188

    These goals should include recovery,
    not just exercise and activity goals.
    If it takes "years" to achieve goals, then
    either the goals are wrong or the
    therapy is wrong. What other treatment
    in medicine would take years to work?
    We suggest "or even years" is deleted.
    If a therapy is not helping within a few
    months, either the therapy or the
    diagnosis or both should be reviewed
    and changes considered. We suggest
    that this advice is pertinent to all
    treatment approaches, not just for GET.

    The statistics indicate that total
    recovery is relatively rare and the
    GDG felt that to include recovery as
    a goal may lead to disappointment.
    As the goals are patient derived
    they may be long term. Interim
    goals would be developed.


    (viii) on Multiple Chemical Sensitivity (MCS):

    Draft text (this is in a section on severe CFS/ME):
    "Family life may also be affected as people with severe CFS/ME are
    often sensitive to sounds and smell. For example, the person may be
    unable to tolerate light or cleaning products whilst they are often
    unable to control their body temperature, thus impacting on the living
    "..Those caring for an individual with severe CFS/ME professionally
    need an understanding of the illness and the needs of the individual
    to meet the challenges of, for example, cooking or cleaning for an
    individual who is sensitive to the smell of food or of cleaning
    materials or bathing an individual who finds touch painful. Therefore
    proper training should be given about the condition with the
    involvement of the patient for any particular problems."

    SH St Bartholomew's Hospital Chronic Fatigue Services
    92 FULL 261 3 +

    A patient with increased sensitivity to the smell of various
    chemicals may be suffering from multiple chemical sensitivity, but
    you would be making a dubious assumption to state this is part of or
    even characteristic of severely disabling CFS/ME. MCS is a
    potentially remediable condition through a graded exposure programme
    on the basis that the underlying pathophysiology is a conditioned
    response. It should not be considered as a part of CFS/ME.

    (See: Staudenmayer H, Binkley KE, Leznoff A, Phillips S. Idiopathic
    environmental intolerance: Part 2: A causation analysis applying
    Bradford Hill's criteria to the psychogenic theory. Toxicological
    Reviews 2003;22:247-61.

    Bornschein S, Hausteiner C, Zilker T, Forstl H. Van den Bergh O,
    Devriese S, Winters W, Veulemans H, Nemery B, Eelen P, Van de
    Woestijne KP. Acquiring symptoms in response to odors: a learning
    perspective on multiple chemical sensitivity. Annals of the New York
    Academy of Sciences 2001;933:278-90.

    Otto T, Giardino ND. Pavlovian conditioning of emotional responses
    to olfactory and contextual stimuli: a potential model for the
    development and expression of chemical intolerance. Annals of the
    New York Academy of Sciences 2001;933:291-309.)

    NICE response:
    This section has been removed.


    (ix) Point about whether CFS/ME is an incurable chronic disease or not:

    Draft text: The objectives of the individualised programme are to:
    • sustain or gradually extend, if possible, the person's physical,
    emotional and cognitive capacity
    • manage the physical and emotional impact of their symptoms.

    SH St Bartholomew's Hospital Chronic Fatigue Services
    103 NICE 18

    The emphasis here would be
    appropriate for someone suffering
    from an incurable chronic disease,
    which CFS/ME is most often not. The
    aim of an individualised programme
    should be to help the patient recover,
    or, if this is not possible, to help the
    patient improve their quality of life and
    minimise disability. The expectation of
    both the patient and the practitioner is
    vitally important in determining
    outcome, and these current aims are
    too conservative, and inconsistent
    with the best available evidence.

    NICE Response:
    The Guideline Development Group had
    to balance a positive outlook with the
    recognition that some people will not


    (x) On liasing with employers:

    Draft text:
    • Healthcare professionals should be proactive in advising about
    fitness for work and education, and recommend adjustments or
    adaptations to work or studies to enable rehabilitation of adults and
    children with CFS/ME. This includes liasing (with the person's
    consent) with employers, education providers and support services e.g:
    occupational health services

    St Bartholomew's Hospital Chronic Fatigue Services
    FULL 23 22 thru 27
    Sometimes acting as an intermediary
    between patient and employer may
    encourage dependence rather than
    fostering recovery via empowerment.
    We therefore suggest adding the
    word "may" on line 24 to read, "This
    may include…"



    Dear Ruth and others,
    PANDORA's representatives will be attending the meeting and we are bringing a hand full of patient advocates to join you on the efforts. I just sent Cort a message. We are going to have some small 8 1/2 X 11 cards that for distribution so patient advocates can hold up during the meeting and during presentations. I will have my MAC lap top with a built-in video that we can record one to one interviews and post on real time on our page. I am also bringing the Empty Chair project pictures in case we don't have a full room which I am hoping we are going to have.
    What have you decided you want to have on the signs?

    Ruth, there is cafeteria in the building, on the same floor where the meeting is held. We are planning to stake out a few tables near the window as our patient advocacy headquarter during the meeting. We will need folks to monitor the table.
    Prices are reasonable etc. Due to the hectic schedule I am in, I haven't been able to read the posts here but I really would like to get a count of everyone who is coming to the meeting so we can show an United front.
  12. Jerry S

    Jerry S Senior Member


    I can't help thinking "sadism by proxy" when I read about Peter White views.

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