Submissions made to CDC pre-June 30 deadline on their draft 5-year CFS plan

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Jun 30, 2009.

  1. QuayMan

    QuayMan Member

    I thought I'd start a new thread that would include submissions made to the CDC by their June 30 deadline on their draft 5-year CFS plan. People can still comment within the thread.
  2. QuayMan

    QuayMan Member

    (Karen sent me this and when I asked her, she said I could re-post it)

    In February 1987, I had a severe stomach virus with 105 fever and delirium
    for several days. Being a workaholic, I went back to work the day after I
    first was able to sit propped up on pillows for an hour. I have never felt
    right since then. Thankfully, I had an employer willing to grant me
    flexibility, and I was allowed to exceed normal amounts of sick leave. On
    March 4, 1988, I was diagnosed with CFS by a virologist. He gave me a
    prescription to improve the quality of my sleep, with assurance that this would
    allow my body to begin to heal itself, and a few months later I was back to
    work full-time.

    For 12 years after diagnosis, I continued to work full-time in a career
    that I loved. There's a For Better or Worse comic that was on both my fridge
    and my office wall for years, to the effect that you know you're in the
    right job when they pay you to do what you'd do for free; that's the way I
    felt about what I did.

    In December 1999, I had a sinus infection, followed by the flu that was
    going around, which tapped out my already-fragile immune system and sent me
    into a rapid downward spiral. Pain that did not respond to Advil was
    keeping me awake; I was lucky to fall asleep from exhaustion between 5 and 6 AM,
    and the alarm clock went off at 7:30. Operating on 2 hours each afternoon of
    sleep, I nonetheless went to work all but one day the next 2.5 months until
    being fired on February 9, 2000 for being too sick to function; I couldn't
    think, couldn't remember, dropped everything I picked up, couldn't coordinate
    my fingers to type, couldn't process speech -- even just getting to work
    required an hour of resting with my head down on my desk before I could do

    As soon as I felt a little better, I started looking for a new job, but
    symptoms manifested during every interview; finally, I had a job interview
    with a lawyer who knew about ADA -- he gave me some cases to read. Since the
    cases said I could not require any employer to provide the extreme
    accommodations I required (such as flexible start time, excessive amounts of sick
    leave, and a place to nap 2 hours a night), I hired myself -- started a
    business of my own and went into partnership with an friend on her business
    (she was doing the technical/physical work and I was doing the
    research/writing because English is not her first language). That is not the behavior of
    someone who is depressed/low self-esteem, nor of someone who is trying to
    avoid working.

    My long-time doctor passed away unexpectedly shortly after I went into
    relapse, and the new doctor I was assigned ignored all the facts -- I told him
    I was diagnosed by a virologist; he instead wrote down that I had a
    lifelong history of depression and stated that no doctor had ever told me I had
    CFS. He tried to tell me that I was just depressed over being divorced,
    though I'd had the same symptoms before/during/after marriage. When I got a
    copy of the medical records, I discovered that the reason he kept
    interrupting when I tried to tell him how the symptoms impacted my ability to do my
    work was because he had made up his mind that I was too lazy to work, and he
    didn't want to hear anything that would contradict that. He also flatly
    refused to order any of the blood tests I wanted or check me into a hospital
    for observation -- anything that would have proved I was telling the truth
    about having objective symptoms not compatible with depression (like
    fever, insomnia, fainting, daily vomiting/diarrhea, etc.), or any other proof
    that I had CFS rather than depression. Clearly a case of "don't confuse me
    with facts, my mind is already made up." I could not tell him to consult
    CDC, because the information disseminated by CDC made it sound like CFS is
    just another name for depression, instead of acknowledging the numerous
    abnormal test results.

    For a quarter-century, CDC has been conspiring with disability insurers to
    portray this as a psychiatric problem (where benefits are often payable for
    only 2 years) rather than a neuro-immuno-endocrine problem with many
    similarities to MS and polio (where they would be obligated to pay benefits for
    life). As a result of CDC's propagation of disinformation, I very nearly
    died of medical malpractice, as a whole series of doctors refused to
    prescribe the pills that experts recommend, instead forcing me to take
    anti-depressants which only made me sicker. When I was finally able to see a doctor
    who had some idea what he was really dealing with, he advised me that I had
    been allowed to deteriorate too far, the physical damage was too severe, I
    would never work full-time again. My beloved career is permanently lost to
    me; at present, I can work only 6-10 hours a week. Whenever I've tried to
    increase that to 12-15 hours, I've relapsed to the point of being
    essentially bedridden for weeks/months.

    CDC seems to be on the verge of recommending physical therapy (GET) and
    psychotherapy (CBT) as the preferred treatments for CFS. I beg to differ.

    One of my closest friends is a retired psychiatric nurse. If she ever saw
    anything wrong with my head, she would order me into counseling, and I
    would go because I trust her to have my best interests at heart. She has never
    made the suggestion, because it is clear to her that I am not depressed.
    What some doctors have tried to write off to anxiety, she sees as
    reasonable precautions based on realistic concerns -- unlike the doctors, she
    listens to what I actually say, rather than writing down what they'd like me to
    say, or (like some doctors) not even bothering to ask the question because
    they think they know what the answer will be.

    As far as GET, I am already as active as I can be. Every time I try to do
    a little more, I get worse. To humor one doctor, I did attempt the daily
    walk he recommended; rather than increasing my energy as would happen with
    depression, my health got worse as the week went on, and I had to stop doing
    household chores in order to have the energy to continue the
    doctor-recommended exercise program. At the end of one week of daily short walks, I
    tried to get out of bed to go to the bathroom and crumpled to the floor, too
    weak to stand. The exact opposite of what he thought would happen, because
    I don't have depression that can be alleviated by endorphins -- I have
    CFS, which is made worse by aerobic exercise (and there are innumerable studies
    proving this objectively).

    A number of international research studies have proven that GET in fact mak
    es patients worse; I have seen some statistics where 80-100% of patients
    felt their health was much worse after exercise, and there is anecdotal
    evidence of patients becoming permanently bedridden after being forced to
    exercise. Before I got CFS, I was a dancer, softball player, volleyball player,
    and avid hiker ... I would like nothing more than to go back to doing the
    sports I loved, but nowadays I cannot even manage a half-hour walk on flat
    terrain without having to go to bed immediately on returning home.

    It is painfully obvious that the CDC employees who are charged with
    learning the truth about CFS are, instead, ignoring mountains of evidence that it
    is a physical illness and trying to portray it as purely psychiatric.
    They insult and ignore patients who try to educate them to what CFS really is.
    THESE PEOPLE MUST GO, IMMEDIATELY. Their attitude is detrimental to both
    patients' health and research. A thorough housecleaning must occur, with
    virologists and neurologists put in charge of the disease, rather than
    someone who is convinced that we are merely emotional basket cases who can't
    handle a little stress. I did not rise to the top of my profession, get
    glowing testimonials to my ability and reliability, by being the weepy
    hysterical hypochondriac that Reeves would like to portray me as.

    MS, a very similar neurological disease, receives research funding of 250
    times as much as CFS on a per-patient basis. Why? We MUST have equality
    in research in order to get a million desperate patients back to health and
    to work.

    If there's a treatment available, then disability insurers will not have to
    worry about being obligated to pay decades of benefits for a physical
    illness versus only 2 years for a psychiatric problem, because patients will
    get back to work in a few weeks/months. However, with no effective treatment
    available, the US is losing $26B a year in productivity -- reinstating
    that would add at least $5B a year in tax revenues to the coffers. Yet, we
    are lucky to get even 1/1000th of that amount in annual research funding that
    would get those people healthy enough to return to work.

    This MUST change. Parity in research funding and researchers who are
    truly dedicated to helping the patients MUST be CDC's top priority. Without
    those things, any five-year plan is simply a waste of taxpayer money.

    Karen M. Campbell
    Sacramento, Calif.
    Founder, _www.CFSFacts.org_ ( -- dispelling the myths and providing the facts
  3. QuayMan

    QuayMan Member

    Jill Cooper from the UK sent the following in. Jill's sister has been ill for a long time. Jill isn't particularly proud of it - most likely feels with more time, she could do something more.

    It is with dismay that I learn that the USA appear to be influenced by the members of the UK medical profession who have been instramental in developing guidelines for the UK which make diagnosis of the disease CFS/ME something which has become nebulous.

    The UK NICE guidelines for CFS/ME have been declared as 'not fit for purpose' by most national charities. The guidelines have been used as a vehicle for the sale and promotion of Cognitive Behavioural Therapy to the National Health Service. The guidelines are generally despised by patients who suffer from the neurological symptoms of CFS/ME and are perceived as a career development opportunity for people hoping to become counsellors specialising in CBT.

    Throughout the United Kingdom CBT is derided.

    The disease of CFS/ME has been hijacked by certain members of the psychiatric profession who have attempted, quite successfully, to change the diagnostic criteria so that it includes people with psychiatric illness.

    This is a travesty and has resulted in funding which was designated for people with CFS/ME being used up by people who do not have the illness. This has left patients who suffer from severe CFS/ME who are housebound and bedbound with no help at all.

    I hope that the government of the United States of America is more astute and has more integrity than to make the suffering of the patients who really do have this awful disease worse.
  4. skeptik2

    skeptik2 Member

    ...sorry, but they are written to the wrong people.

    What are you all going to do when the CDC ignores all of you?

    I'm not waiting...

    Join me; write to the Center for Constitutional Rights and Theresa McGovern at the MFY and ask them to support my request to consider our concerns for a class action lawsuit. I wrote them yesterday; more letters would help.

    So sorry, I'm new on a PC; you can google both easily...

    Best to us all,
  5. QuayMan

    QuayMan Member

    (Posted on Co-Cure and

    (Part 1 of 2) I sent the information about the 10 surveys out a few days ago
    (I have altered the wording slightly as one person pointed out it is a
    little unclear) - I am still interested in getting information on any other
    survey results that might be out there on GET, CBT, etc. Also I'm
    interested in more information on the Norwegian survey.

    In my submission, I included what I sent to them at the end of April again
    as I didn't have the time or inclination to spend the time, making the same
    points again. I'm not including this now as the piece is long enough and I
    have already posted something similar at: i.e.
    m=20143 Tom]

    ~~~~~~~Submission starts here ~~~~

    From Tom Kindlon ( [log in to unmask] or [log in to unmask] )

    (*This appears longer than it should be because I have appended my April
    submission below in green (Appendix 2) as well as 1440 signatures and
    comments from the petition complaining against the CDC's use of the "empiric
    definition" (Reeves, 2005). Most of the rest of the text is made up with
    the results from 10 ME/CFS surveys. The rest of the text is not that long
    (2881 words) *)


    I would first like to thank you for the opportunity to make these comments.
    Unfortunately I have not been able to allocate as much time as I would like
    to the task. So in my main submission I am not going to repeat many of the
    comments I made in my two oral statements to the April 27 meeting on the
    CDC's draft research program which I wrote up and submitted in writing
    before the April 30 deadline (appended below in green).

    I should say that I have had two letters published in high impact journals
    (the British Medical Journal and Brain) on the subject of Chronic Fatigue
    Syndrome (CFS) in the last year. So although unfortunately because of
    ill-health, I have not been able to reach my potential in terms of academic
    qualifications [I scored 1460 in the SATs in 1991 (i.e. before they were
    re-graded upwards, scoring the top percentile in both subjects); I became a
    member of MENSA with an IQ in the top percentile in 1990 and in the last
    exams I did in college before severe disability struck (2nd year,
    Mathematical Science, Trinity College Dublin)) I got all (6) firsts, I have
    shown I am able to make intelligent comment.

    Given the CDC is now moving into the area of ME/CFS interventions and
    particularly the area of treatment recommendations for others, I plan to
    share some information, thoughts and analysis on the treatment/ management
    modality of Graded Exercise Therapy (GET) and if time allows, also Cognitive
    Behavioural Therapy (CBT) based on GET (given CBT is recommended for many
    conditions in medicine, not all forms of CBT are the same).

    I will also give some information on the petition I set up on April 15, "CDC
    CFS research should not involve the empirical definition (2005)" .

    I mentioned this before in my oral submission but the number of signatures
    has now increased to 1440, with many people giving comments which can be
    read at the site (more people have told me they gave comments but for some
    reason to do with the software of the site (I believe) they did not appear).

    The safety of treatments and interventions is one of the most important
    issues, if not the most important issue in medicine. The ideas behind the
    phrase "First do no harm" are something that are inculcated in medical
    students around the world. As Wikipedia says (on the phrase), 'Another way
    to state it is that "given an existing problem, it may be better to do
    nothing than to do something that risks causing more harm than good."'.

    With many interventions such as pharmaceutical drugs, there are mechanisms
    in place so that if adverse reactions occur, even after a treatment has been
    approved, this information is noted and attempts are made to collate the
    information. For example, in the UK (and perhaps elsewhere in the world), a
    yellow card scheme where either prescribing professionals or patients
    themselves can report adverse reactions. Drugs can often be taken off the
    market years after they were first "released" when it is discovered that
    they can cause adverse reactions

    Unfortunately, with non-pharmaceutical interventions, such options are not
    there. So what is the next best thing? Using the information from patient
    surveys is the obvious answer. Later I will give some information from
    patient surveys about high rates of adverse reactions reported following the
    use of (i) Graded Exercise Therapy (GET) and (ii) Cognitive Behavioural
    Therapy (CBT) based on GET in the UK and indeed some other countries in
    ME/CFS patients.

    The CDC, amongst other things, plans to begin "providing the most current
    evidence-based information concerning CFS to federal, state, and local
    public health authorities, related government agencies, and HMOs and
    building long-term relationships with government and non-government

    I am concerned that these plans may involve promoting potentially dangerous
    treatments: (i) Graded Exercise Therapy (GET) and (ii) Cognitive Behavioural
    Therapy (CBT) based on GET.

    I also concerned that information will not be passed on about adverse
    reactions, that have been reported by patients using these treatment
    modalities. There are plausible scientific reasons why people can be
    suffering adverse reactions to treatments which encourage increases in
    activity: there are numerous studies that show that the response to exercise
    in ME/CFS is unusual. The abnormal response to exercise is not restricted to
    intense exercise. It has also been noted in a study which measured the
    effect of the journey to the testing centre (White, JoCFS, 2005). An
    exercise test is like a trial of a high dose of a drug.

    It is important that professionals are told of the abnormal response to
    exercise in ME/CFS.

    It is also important that patients are given the risks associated with
    treatments. This does not seem to be occurring routinely at the moment in
    some places around the world where GET and CBT based on GET is "offered".
    This means patients can not give informed consent to the treatments they are
    trying. Patients trying pharmaceutical agents are given information, so why
    not patients with ME/CFS when they are being prescribed treatments? This
    suggests that people with ME/CFS are being treated like second class
    citizens, not worthy of the protections that are offered to other patients.
    This needs to change with anything the CDC recommends.

    It also appears likely that the effectiveness of these treatments will be

    For example, Bill Reeves at the May 2009 CFSAC meeting said: "CBT/GET is not
    the cure for everybody - nobody knows how many it is - it probably applies
    to a subset."

    But where is the evidence from the literature that GET is a cure for anybody
    with CFS? I am unaware of any.

    And where is evidence that CBT based on GET is a cure for anybody with CFS?
    Few studies have made such claims. To the best of my knowledge these have
    used unsatisfactory definitions of recovery such as a patient being
    considered "recovered" or "fully recovered" if they didn't score in the low
    percentiles for certain self-rated questionnaires [such as the 85th
    percentiles for the definition of "full recovery" in Knoop (2007) (although
    some of patients actually scored in a lower percentile on one of the
    questionnaires and were still considered "fully recovered"]. These are very
    unsatisfactory definitions of recovery but I fear that because of the
    influence of people like Peter White and Gijs Bleijenberg who hype these
    treatments' effectiveness, official CDC literature will be talking about
    these treatments leading to recovery in some.

    It is generally accepted that CFS is a heterogeneous condition. In
    particular, few if any researchers would say that CFS as defined by the
    "empiric definition" (Reeves, 2005) represents a homogeneous condition.
    However for some reason Peter White despite recognising that CFS is a
    heterogeneous condition, believes that with regard to treatment CFS should
    be regarded as homogeneous (sample reference: RSM lecture, April 2008).
    This is a potentially dangerous belief to promulgate especially given all
    the adverse reactions that have been reported with regard to GET and CBT
    based on GET. I hope that the CDC will not use such lazy constructs and
    will make clear when discussing CFS with regards to treatments (and, in
    particular, with regards to GET and CBT based on GET) that CFS should be
    considered as heterogeneous with regards to the effectiveness of treatments.
    Not everyone has shown the same results in clinical trials as well as
    surveys so until more is known about CFS, heterogeneity should also be
    mentioned in the context of treatments.

    As I understand it, the CDC has largely been depending on information from
    Peter White to gain information on the situation in the UK. A major problem
    with this is that I do not recall hearing or reading Peter White informing
    readers or audiences the percentages that have reported adverse reactions
    with regards to GET and CBT based on GET in surveys and the like. As I have
    said, with no formal method for reporting adverse reactions to
    non-pharmaceutical modalities such as GET and CBT based on GET, the results
    of surveys take on a larger importance so I will give some information on
    these in a moment. I have read people suggest that Peter White hypes the
    effectiveness of GET and CBT based on GET and downplays any risks because of
    his connections with the insurance industry. I remain to be convinced by
    arguments based solely on money, although I do think it is important that
    the CDC reports these interests in the same way that it would be expected to
    report individuals interests in pharmaceutical agents. I think Peter White
    has taken an approach not suitable for clinical medicine and simply ignored
    information and data (on the issue of adverse reactions) that does not fit
    with his pre-existing theories.

    Anyway, to move to some numerical data, here are the results of some
    numerical data from surveys of patients.


    Survey 1: (UK) Action for ME (2001)

    In the UK, the Chief Medical Officer (CMO) (i.e. a government job somewhat
    similar to the position of Surgeon General in the US) set up in 1999 a
    working group to report on the area of "CFS/ME".

    Amongst other things, when they reported in 2002, the report included the
    following data from a survey.

    No change
    Made worse

    Drug medication for pain

    Drug medication for sleep

    Pacing your activities

    Graded exercise

    Diet changes

    Nutritional supplements

    Rest, including bed rest

    Cognitive Behavioural Therapy


    *Not all the respondents experienced each treatment approach

    (Action for ME Membership Survey, 2001. 2338 respondents in total)

    This data was then included in the Full NICE Guidance on CFS/ME (Page 95 of

    No change
    Made worse

    Drug medication for pain

    Drug medication for sleep

    Pacing your activities

    Graded exercise

    Diet changes

    Nutritional supplements

    Rest, including bed-rest

    Cognitive behavioural therapy


    [Aside: there are three changes by 1% from the figures given in the CMO
    Report - these are on "occasions" when the first numbers did not add to 100%
    but with the changes, the numbers all added to 100%. Somebody presumably
    thought they need to be changed. Due to rounding, the numbers do not need to
    add to 100% to be accurate, so I believe the first set of figures should be
    considered the most accurate data]

    As one can see, Graded Exercise Therapy had a terrible safety profile in
    this data - 50% of 1214 people reported being made worse - that's the
    equivalent of 607 reports of adverse reactions! CBT had the second worst
    safety profile with 26% reporting being made worse by it. But this was for
    a smaller number of patients (285) than GET, so is equivalent to 74 reports
    of adverse reactions.

    Pacing and rest (including bed rest) had both the highest rates of people
    reporting they were helpful (89% and 91%) and also the lowest rates of
    adverse reactions - just 1% for each (note: as I say, the first set of data
    appears to be the most accurate one with the second data having being
    adjusted to add to 100%).


    Survey 2: (UK) ME Association (2009)

    The UK's ME Association recently organised possibly the largest ever survey
    of people with ME/CFS. In its Spring 2009 magazine, it included data on 25
    therapies. Yet again, Graded Exercise Therapy (GET) had the highest rates
    of adverse reactions with a whopping 56.5% of people reporting being made
    worse by the intervention:

    Graded Exercise Therapy

    906 replies:

    Made much worse: 33.1%

    Slightly worse: 23.4%

    No change: 21.4%

    Improved: 18.7%

    Greatly improved: 3.4%

    The related treatment modality of physiotherapy (i.e. therapy provided by a
    physical therapist) also had a high rate of adverse reactions (32.8% in


    862 replies:

    Made much worse: 15.7%

    Slightly worse: 17.1%

    No change: 36.7%

    Improved: 27.0%

    Greatly improved: 3.5%

    Cognitive Behaviour Therapy (CBT) had a lower but still significant rate of
    adverse reactions 19.5% or 194 out of 997 cases:

    Cognitive Behaviour Therapy (CBT)

    Made much worse: 7.9%

    Slightly worse: 11.6%

    No change: 54.6%

    Improved: 27.0%

    Greatly improved: 3.4%

    CBT also came very low (21st of 25) on the table of treatments based on the
    percentage of people helped by them. The only treatments below them were
    Imunovir (which had only being tried by 62 patients, the lowest number of
    the 25 treatments) (25.8% reporting it helped them), NADH and Graded
    Exercise Therapy.

    The treatment with the highest percentage of people saying it helped was
    pacing of activities:


    2137 replies

    Made much worse: 1.2%

    Slightly worse: 3.5%

    No change: 24.1%

    Improved: 59.6%

    Greatly improved: 11.6%

    Pacing also had one of the lowest rates of people saying they were made
    worse by the treatment.


    Survey 3: (UK) 25% ME Group (2004)

    In the UK, there is an ME charity specifically for severely affected
    patients with ME, called the 25% ME Group.

    It conducted a survey of its members which got a response rate of 66% or 437

    This is a direct quote from their report where they quote the statistics
    i.e. out of 170 patients who had tried Graded Exercise Therapy (GET), 139
    had been made worse by it!

    "By far the most unhelpful form of treatment was considered to be Graded
    Exercise Therapy (GET). This is a finding that may surprise some readers,
    given the current medical popularity of this approach. However, these
    patients' perceptions are supported by data from previous experience: of
    the 39% of our members who had actually used Graded Exercise Therapy, a
    shocking 82% reported that their condition was made worse by this treatment.
    On the basis of our members' experiences we question whether GET is an
    appropriate approach for patients with ME. It is worth noting that some
    patients were not severely affected before trying GET. Thus, it is not only
    people with severe ME who may be adversely affected by this form of


    Survey 4: "Scotland M.E./CFS Scoping Exercise Report" (October 2007)

    With Section 16b Funding through The Scottish Government, Action for ME

    produced a report: "Scotland M.E./CFS Scoping Exercise Report" (October

    "In total 564 people with M.E. were sent a questionnaire (510 sent hard
    copies, 54 electronic versions). 399 completed questionnaires were received
    which represents a 71% return." (Page 8)

    Table (Page 9)

    Treatment Helpful no effect made me worse
    didn't try

    CBT 15.5% 17.5% 7%

    GET 5% 6% 32%

    Graded Activity18% 8% 30%

    Pacing 77% 8.5% 3.5% 11%


    Translating these percentages into percentages solely based on people who
    had actually tried a treatment (more interesting figures, I think most
    people would agree), would give the following figures (the actual figures
    may have been a tiny bit different because of rounding):




    Numbers Tried: 160

    Helpful: 38.75% (=15.5/40) (62)

    No effect: 43.75% (=17.5/40) (70)

    Made me worse: 17.5% (=7/40) (28)


    GET (i.e. Graded Exercise Therapy)


    Numbers Tried: 172

    Helpful: 11.63% (=5/43) (20)

    No effect: 13.95% (=6/43) (24)

    Made me worse: 74.42% (=32/43) (128)


    Graded Activity


    Numbers Tried: 224

    Helpful: 32.14% (=18/56) (72)

    No effect: 14.29% (=8/56) (32)

    Made me worse: 53.57% (=30/56) (120)




    Numbers Tried: 298

    Helpful: 86.52% (=77/89) (258)

    No effect: 9.55% (=8.5/89) (28)

    Made me worse: 3.93% (=3.5/89) (12)

    A few proponents of GET have tried to say that figures from surveys are
    somehow not significant because we don't know whether the people did Graded
    Exercise Therapy under a professional or not. Firstly surveys 5 and 6
    (below) show that the evidence isn't there to show that doing these
    treatments under a specialist is safer. Also the fact remains that GET is
    like an "over-the-counter" drug. People will try it if information is put
    out that it is an effective treatment either under a professional or by
    themselves. Which means promoting it as a treatment for ME/CFS risks
    damaging people's health.


    Survey 5: (UK) Action for ME (2003)

    Action for ME in 2003 wanted to follow up on its previous survey to see
    whether changes were occurring with regards to members' experiences of
    treatments. It restricted responses to treatments received over the
    previous three years so that the results would not overlap with a previous
    survey. 550 patients were sent a questionnaire, "your experiences", with
    354 people responding (a response rate of 64%).

    List of results for people who did GET broken down by the practitioner:

    Under a Physio:

    Negative 12 (67%) Neutral 0 (0%) Positive 6 (33%)

    Under an OT:

    Negative 6 (100%) Neutral 0 (0%) Positive 0 (0%)

    Under a Doctor:

    Negative 3 (27%) Neutral 1 (9%) Positive 7 (64%)

    Under a Behavioural Therapist:

    Negative 1 (25%) Neutral 1 (25%) Positive 2 (50%)


    Negative 3 (100%) Neutral 0 (0%) Positive 0 (0%)

    No Professional:

    Negative 1 (8.33%) Neutral 4 (33%) Positive 7 (58%)

    With regard to this group the authors of the report say:

    "Had NO professional input (had they therefore paced themselves ?) -

    mostly with positive outcomes"

    If one combines

    Under a physio + Under an OT + Under a doctor + Under a behavioural

    therapist, to get a figure for under a professional:

    Negative 22 (56.41%) Neutral 2 (5.13%) Positive 15 (38.46%)

    So those who did GET under a professional had much higher rates of adverse


    Survey 6: (UK) Action for ME/Association for Youth with ME (2008):

    This is another large survey, with 2763 patients with ME or CFS in the UK
    responding to a questionnaire which asked about people's experiences of
    treatments over the last three years (to avoid overlap with other surveys
    Action for ME had undertaken).

    It found that of 699 who said they'd tried Graded Exercise Therapy, 34% said
    they'd been made worse by it compared to 45% who said they'd been helped and
    21% who said it made no difference.

    The contention that people would not have being made worse by a treatment if
    they had done the treatment under specialist supervision, is not backed up
    by the data from this study.

    In this study patients were asked who provided the GET treatment. 567
    answered this question (i.e. 132 did not). 181 (31.92%) of these said it had
    made them worse compared to 276 (48.68%) who said it helped and 110 (19.40%)
    who said it made no difference.

    335 of these 567 patients said they had done the management strategy under
    an "NHS specialist". 111 (31.27%) of this group said they'd been made worse
    compared to 162 (45.63%) who said they'd been helped and 82 (23.10%) who
    said it made no difference.

    So you can see that a similar percentage of people were made worse by GET
    who had done it under an NHS Specialist as those who had not, so doing it
    under an NHS specialist did not reduce the rate of adverse reactions.

    So a large proportion of patients in the UK have experienced adverse
    reactions for trying Cognitive Behaviour Therapy (CBT) and in particularly
    Graded Exercise Therapy (GET). However it is my experience from reading
    Peter White's writings and hearing him talk that he does not inform people
    of this information.

    Given the seriousness of the issue, I feel it would irresponsible if the CDC
    allows Peter White to be the only representative from the UK.

    Suggestions for others on the ground who are not in denial of the issue of
    adverse reactions from GET (like Peter White appears to be) include: Charles
    Shepherd MD [log in to unmask] ; Ellen Goudsmit PhD
    CPsychol AFBPsS (a Chartered Health Psychologist) [log in to unmask]
    ; Abhijit Chaudhuri DM MD PhD FACP FRCP (a consultant neurologist)
    [log in to unmask] ; Neil Abbot MSc PhD (Operations Director, ME Research
    UK) [log in to unmask] and William Weir MD (an infectious disease
    consultant who ran an NHS clinic for ME for a number of years - I don't have
    an E-mail address at the time of writing but he can be contacted through his
    practice at: +44-207-467-8478 (i.e. from the US: 00-44-207-467-8478). All
    of these five professionals have published in the area and been in the area
    for over 10 years - I think Dr William Weir is in the area for approximately
    20 years and Drs Shepherd and Goudsmit for over 20 years. Drs Chaudhuri and
    Goudsmit did their PhDs in the area.

    (Part 2 of 2) (Tom: below the information on surveys is a little bit of
    extra comment on the CDC's plans, for what it's worth)

    Surveys from other countries:

    The 6 above surveys are from the UK. I have information on some surveys
    undertaken by local groups in the UK which would also report high rates of
    adverse reactions both from CBT and especially GET.

    However reports of adverse reactions are not restricted to the UK.

    Gijs Bleijenberg PhD is a Dutch psychologist which the CDC has worked with.
    I fear he will not have shared with the CDC or others results of surveys of
    patients which show a somewhat different picture to the studies he has


    Survey 7:

    Koolhaas et al (2008/2009)

    *Majority of ME/CFS patients negatively affected by Cognitive Behaviour

    (From: )

    To the best of my knowledge, this was presented at the 2009 IACFS/ME
    conference by Dr Van Hoof.

    The following summary is from page 4 of the Dutch-language study.

    Cognitieve gedragstherapie bij het chronische vermoeidheidssyndroom (ME/CVS)

    vanuit het perspectief van de patiënt

    Drs. M.P. Koolhaas, H. de Boorder, prof. dr. E. van Hoof

    Date: February 2008

    ISBN: 978-90-812658-1-2

    The Netherlands



    *In recent years, Chronic Fatigue Syndrome, also known as Myalgic

    (ME/CFS), has been getting a lot of attention in scientific literature.
    However its aetiology

    remains unclear and it has yet to be clarified why some people are more
    prone to this

    condition than others. Furthermore, there is as yet no consensus about the
    treatment of

    ME/CFS. The different treatments can be subdivided into two groups, the

    and the psychosocial therapies. Most of the scientific articles on treatment
    emphasize the

    psychosocial approach.

    The most intensively studied psychological therapeutic intervention for
    ME/CFS is cognitive

    behaviour therapy (CBT). In recent years several publications on this
    subject have been

    published. These studies report that this intervention can lead to
    significant improvements in

    30% to 70% of patients, though rarely include details of adverse effects.
    This pilot study was

    undertaken to find out whether patients' experiences with this therapy
    confirm the stated

    percentages. Furthermore, we examined whether this therapy does influence

    employment rates, and could possibly increase the number of patients
    receiving educational

    training, engaged in sports, maintaining social contacts and doing household


    *By means of a questionnaire posted at various newsgroups on the internet,
    the reported

    subjective experiences of 100 respondents who underwent this therapy were

    These experiences were subsequently analysed.


    *Only 2% of respondents reported that they considered themselves to be
    completely cured upon finishing the therapy. Thirty per cent reported 'an
    improvement' as a result of the therapy and the same percentage reported no
    change. Thirty-eight percent said the therapy had affected them adversely,
    the majority of them even reporting substantial deterioration. Participating
    in CBT proved to have little impact on the number of hours people were
    capable of maintaining social contacts or doing household tasks. A striking
    outcome is that the number of those respondents who were in paid employment
    or who were studying while taking part in CBT was adversely affected. The
    negative outcome in paid

    employment was statistically significant. CBT did, however, lead to an
    increase in the

    number of patients taking up sports.

    A subgroup analysis showed that those patients who were involved in legal
    proceedings in order to obtain disability benefit while participating in CBT
    did not score worse than those who were not. Cases where a stated objective
    of the therapy was a complete cure, did not have a better outcome. Moreover,
    the length of the therapy did not affect the results.


    *This pilot study, based on subjective experiences of ME/CFS sufferers, does
    not confirm the high success rates regularly claimed by research into the
    effectiveness of CBT for ME/CFS. Over all, CBT for ME/CFS does not improve
    patients' well-being: more patients report deterioration of their condition
    rather than improvement. Our conclusion is that the claims in scientific
    publications about the effectiveness of this therapy based on trials in
    strictly controlled settings within universities, has been overstated and
    are therefore misleading. The findings of a subgroup analysis also
    contradict reported findings from research in strictly regulated settings.


    Survey 8: Survey of 3 Dutch ME/CFS patient organizations (December 2008):

    3 Dutch ME/CFS patient organisations published in December 2008 at: the results
    of a large survey they undertook. Following the link, one can see the
    questionnaire that was used.

    Table 2.1 numbers of sent questionnaires and responses returned to the

    patients' associations

    Number sent: 740

    Total number of responses: 449

    % response rate (gross): 60.7%

    Number of filled in questionnaires: 412

    % Net response rate: 55.7%


    (Rough) Translation into English of the results tables from a large survey
    of the membership of three Dutch ME/CFS patient organisations (part 2 of 2)

    Table 4.10 Treatment or accompaniment/support/management concerning the

    diagnosis ME/CFS and the impact experienced of that treatment or


    Treatment or accompaniment/support/management

    Column 1: % that has had (the) treatment

    Column 2: Number of those that have answered

    Column 3: Impact: After (i.e. because of) the treatment, improved

    Column 4: No impact

    Column 5: Impact: After (i.e. because of) the treatment, disimproved

    - Diet 65,2% n=251 50,2% 43,8% 6,0%

    - Homoeopathy 64,6% n=247 30,8% 62,8% 6,5%

    - Physiotherapy 52,4% n=203 36,9% 41,9% 21,2%

    - Vitamin B12 48,2% n=184 32,1% 63,0% 4,9%

    - Psychotherapy (not CBT), Psychological support 46,1% n=169 33,1%

    60,9% 5,9%

    - Management based on trying to have a balance of rest and activity 44,2%

    n=172 57,0% 33,7% 9,3%

    - Antidepressants 43,0% n=165 32,7% 36,4% 30,9%

    - Carnitine 40,9% n=156 37,2% 53,8% 9,0%

    - Melatonin 38,0% n=146 32,9% 50,7% 16,4%

    - Graded Activity/Exercise Therapy 37,3% n=142 43,0% 23,9% 33,1%

    - Painkillers 37,0% n=138 47,1% 47,8% 5,1%

    - Cognitive Behavioural Therapy (CBT) 29,9% n=115 30,4% 42,6% 27,0%

    - oefentherapie (I think this is a cross between physiotherapy and the

    Alexander Technique) 27,0% n=102 20,6% 42,2% 37,3%

    - Herbal Medicine 26,7% n=97 28,9% 61,9% 9,3%

    - Bed-rest 11,7% n=45 48,9% 44,4% 6,7%

    - Participation at a rehabilitation centre 10,2% n=40 45,0% 35,0% 20,0%

    - Immunological therapy 7,7% n=25 44,0% 40,0% 16,0%

    - Neurofeedback 3,8% n=14 35,7% 57,1% 7,1%

    To summarise the data here for GET/GAT, CBT and Physiotherapy in a way that
    is easier to read

    The results for Graded Activity/Exercise Therapy were:

    142 respondents

    Improved: 61 (43.0%)

    No impact: 34 (23.9%)

    Disimproved/Made worse: 47 (33.1%)


    203 respondents

    Improved: 75 (36.9%)

    No impact: 85 (41.9%)

    Disimproved/Made worse: 43 (21.2%)

    Cognitive Behavioural Therapy (CBT)

    115 respondents

    Improved: 35 (30.4%)

    No impact: 49 (42.6%)

    Disimproved/Made worse: 31 (27.0%)


    Tabel 4.10 Behandeling of begeleiding in verband met de diagnose ME/CVS en

    het ervaren effect van die behandeling of begeleiding

    Behandeling of begeleiding % dat

    Column 1: % dat behandeling heeft gehad

    Column 2: aantal dat vraag naar effect heeft beantwoord

    Column 3: Effect: Het ging daarna beter

    Column 4: Geen effect

    Column 5: Effect: Het ging daarna slechter

    - dieet 65,2% n=251 50,2% 43,8% 6,0%

    - homeopathie 64,6% n=247 30,8% 62,8% 6,5%

    - fysiotherapie 52,4% n=203 36,9% 41,9% 21,2%

    - vitamine B12 48,2% n=184 32,1% 63,0% 4,9%

    - psychotherapie (niet CGT), psychologische begeleiding 46,1% n=169 33,1%

    60,9% 5,9%

    - begeleid zoeken naar een balans van activiteiten en rust 44,2% n=172 57,0%

    33,7% 9,3%

    - antidepressiva 43,0% n=165 32,7% 36,4% 30,9%

    - carnitine 40,9% n=156 37,2% 53,8% 9,0%

    - melatonine 38,0% n=146 32,9% 50,7% 16,4%

    - begeleide opbouw van activiteiten 37,3% n=142 43,0% 23,9% 33,1%

    - pijnstillers 37,0% n=138 47,1% 47,8% 5,1%

    - cognitieve gedragstherapie (CGT) 29,9% n=115 30,4% 42,6% 27,0%

    - oefentherapie 27,0% n=102 20,6% 42,2% 37,3%

    - kruidentherapie 26,7% n=97 28,9% 61,9% 9,3%

    - bedrust met begeleiding 11,7% n=45 48,9% 44,4% 6,7%

    - opname in revalidatiecentrum 10,2% n=40 45,0% 35,0% 20,0%

    - immunologische therapie 7,7% n=25 44,0% 40,0% 16,0%

    - neurofeedback 3,8% n=14 35,7% 57,1% 7,1%

    Survey 9: Norway (2009)

    [Patients' experience with treatment of chronic fatigue syndrome.]

    Tidsskr Nor Laegeforen. 2009 Jun 11;129(12):1214-6

    [Article in Norwegian]

    *Bjørkum T*

    *Wang CE*,

    *Waterloo K*.

    [log in to unmask] Sogndal BUP Postboks 184 6851 Sogndal.

    BACKGROUND: Chronic fatigue syndrome is a highly debated condition. Little
    is known about causes and treatment. Patients" experience is important in
    this context.

    MATERIAL AND METHODS: 828 persons with chronic fatigue syndrome (ICD-10
    code: G93.3) were included in the study. They were recruited through two
    Norwegian patient organizations (ME-association and MENiN). The participants
    filled in a questionnaire on their experience with various approaches to
    alleviate their condition.

    RESULTS: Pacing was evaluated as useful by 96% of the participants, rest by
    97%, and 96% of the participants considered complete shielding and quietness
    to be useful. 57% of the participants who had received help to identify and
    challenge negative thought patterns regarded this useful. 79% of the
    participants with experience from graded training regarded this to worsen
    their health status.

    Overall, the results were similar, irrelevant of the severity of the

    INTERPRETATION: Most participants in this study evaluated pacing, rest and
    complete shielding and quietness to be useful. The experience of the
    participants indicate that cognitive behaviour therapy can be useful for
    some patients, but that graded training may cause deterioration of the
    condition in many patients. The results must, however, be interpreted with
    care, as the participants are not a representative sample, and we do not
    know the specific content of the approaches.

    Survey 10: (US) The CFIDS Association of America 1999 Reader Survey:

    The largest survey of ME/CFS patients that I am aware of in the US was
    published by the the CFIDS Association of America in 1999 (questionnaires
    were also distributed that year).

    I can send a copy of the page of results of 28 therapies on request.
    Unfortunately, I do not have time to type in all the results at present.

    820 readers filled in the questionnaire.

    The results for Graded Exercise Therapy were:

    462 respondents

    Helped a lot: 111 (24.0%)

    Helped a little: 170 (36.8%)

    No effect: 51 (11.0%)

    Harmful: 130 (28.1%).

    Numerically this was the highest rate of adverse reactions. Numerically the
    second highest rate of adverse reactions was reported for antidepressants:


    539 respondents

    Helped a lot: 163 (30.2%)

    Helped a little: 154 (28.6%)

    No effect: 104 (19.3%)

    Harmful: 118 (21.9%).

    In terms of percentages, Graded Exercise Therapy had the third highest rate
    of adverse reactions. Two treatments, Beta-blockers and colonics, which I
    think the CDC is unlikely to recommend, were marginally higher:


    172 respondents

    Helped a lot: 33 (19.1%)

    Helped a little: 39 (22.7%)

    No effect: 45 (26.2%)

    Harmful: 55 (32.0%).


    131 respondents

    Helped a lot: 14 (10.7%)

    Helped a little: 38 (29.0%)

    No effect: 42 (32.1%)

    Harmful: 37 (28.2%).

    CBT had a lower rate of adverse reactions compared to the rates seen in
    other surveys. This may be because CBT in the US currently is not simply
    based on GET – there are different forms offered, some which might encourage
    the pacing of activities. However this might change if information from the
    form of CBT that tends to be used in the UK and the Netherlands is
    highlighted by the CDC.


    160 respondents

    Helped a lot: 48 (30.0%)

    Helped a little: 60 (37.5%)

    No effect: 38 (23.8%)

    Harmful: 16 (10.0%).

    The treatment with the best results was Pacing of activities. It had the
    lowest rate of adverse reactions (1/601 or 0.2%) and the highest helpful
    percentage (i.e. the sum of the percentages for helped a little and helped a


    601 respondents

    Helped a lot: 423 (70.4%)

    Helped a little: 167 (27.8%)

    No effect: 20 (3.3%)

    Harmful: 1 (0.2%).

    As I have pointed out, Peter White has strong views on Graded Exercise
    Therapy (GET). He has also got strong views against Pacing and at the last
    moment resigned from the CMO group on CFS/ME (2002) (mentioned above) as it
    had placed Pacing on the same level as GET and CBT. People involved in the
    committee were annoyed at this as people had made a lot of concessions to
    try to get a document people like him would sign.

    This is relevant when one is talking about an “international consensus on
    management.” Basically by selecting Peter White for such a committee, it is
    very likely that the document will recommend GET with few caveats or
    warnings; alternatively Peter White will resign. His views would not be
    representative of a lot of the opinions in the UK or internationally, so it
    would not really be an international consensus if he was on the sole UK

    As I mentioned before, I believe you need people on any panel who are not in
    denial about the adverse reactions from GET (like Peter White appears to
    be). Here are my suggestions again: Charles Shepherd MD
    [log in to unmask] ; Ellen Goudsmit PhD CPsychol AFBPsS (a
    Chartered Health Psychologist) [log in to unmask] ; Abhijit Chaudhuri
    DM MD PhD FACP FRCP (a consultant neurologist) [log in to unmask] ; Neil
    Abbot MSc PhD (Operations Director, ME Research UK) [log in to unmask]
    and William Weir MD (an infectious disease consultant who ran an NHS clinic
    for ME for a number of years – I don’t have an E-mail address at the time of
    writing but he can be contacted through his practice at: +44-207-467-8478
    (i.e. from the US: 00-44-207-467-8478). Without individuals who are willing
    to challenge Peter White on such a panel, I believe one is likely to get a
    document which hypes the benefits of GET and CBT based on GET and does not
    give much if any information on potential risks. To me, this would seem
    like a very irresponsible thing for an agency like the CDC to do.

    The other point I want to re-iterate is my problems with the way the CDC CFS
    team have “operationalized” the Fukuda definition with the “empiric
    definition” (Reeves, 2005).

    I have previously mentioned virtually all the points I would like to make on
    the topic as comments on papers that involved the definition. They are
    appended below in green (as they were included in my last submission).

    Frustrated with both the lack of feedback and the CDC’s continued use of the
    definition, I set up a petition on the issue (see Appendix 1). Despite the
    petition’s text not being very “catchy”, there are 1440 signatures.

    I am appending the signatures below along with comments they made (more
    people me they made comments but for some reason some comments never showed
    up – given these are people signing a petition against the definition, these
    would not have been positive comments).

    As I said in my (written) testimony to the May 2009 CFSAC meeting: “If one
    has a heterogeneous group of patients, it can mean that in intervention
    trials, if “true” CFS patients only make up a tiny fraction of the cohort,
    useful interventions could come up as showing no effect (or even being
    detrimental); alternatively, interventions may come up as being useful for
    CFS when in fact if one had only looked at those with “true” CFS, the
    intervention may have made no difference or may even have been detrimental.”
    Given that the CDC is now moving towards intervention studies, this is a
    particularly important issue.

    The CDC’s response to this criticism might be that using subsets can deal
    with this issue. However the definition has been broadened so much by the
    empiric definition that it is far from clear that this is enough. The
    prevalence rates from CDC CFS studies went up from 0.235% to 2.54%. That
    means that on average, patients satisfying the Fukuda definition as the CDC
    was previously using it would only make up 9.25% of the patients covered by
    the “empiric definition”. And of course due to the nature of probabilities,
    the actual figures could well be lower. And even if 9.25% were inducted
    into a study, on average in a trial which had at least two “arms”, one of
    the arms would have a cohort with less than 9.25% of the individuals
    satisfying the Fukuda definition as the CDC was previously defining it. And
    of course, even at the earlier stage, it was recognized that even the Fukuda
    definition captured a heterogeneous population.

    Of course, this point is true in general with the “empiric” definition – the
    definition has become so broad that it may now be impossible to find the
    subsets that make up CFS.

    One other point: as far as I can see, the only virus group specifically
    referred to in the CDC’s long 5-year Strategic Plan is HHV6.

    It would be good if some of the CDC's (not inconsiderable) CFS research
    budget could be used to investigate enteroviruses in CFS. In 2007 a study
    involving enteroviruses[4] resulted in much excitement in the media on the
    subject. It found, in a sample of CFS patients who had gastrointestinal
    symptoms, that 135/165 (82%) biopsies stained positive for VP1 within
    parietal cells, whereas 7/34 (20%) of the controls stained positive
    (p=<0.001). Earlier studies have demonstrated circulating antigen of
    enterovirus, raised antibody titres and viral RNA in the blood and muscle
    biopsy specimens of patients with CFS[4-8]. John Chia does recognize that
    other infections could be playing a part in some CFS cases but enteroviruses
    are by far the most common infection he is finding in his clinic in


    [1] Gelman JH, Unger ER, Mawle AC, Nisenbaum R, Reeves WC: Chronic fatigue
    syndrome is not associated with expression of endogenous retroviral p15E.
    Molec Diagnosis 2000, 5:155-156.

    [2] Vernon SD, Shukla S, Reeves WC: Absence of Mycoplasma species DNA in
    chronic fatigue syndrome. J Med Microbiol 2003, 52:1027-1028.

    [3] Jones JF, Kulkarni PS, Butera ST, Reeves WC: GB virus-C--a virus without
    a disease: we cannot give it chronic fatigue syndrome. Jones JF, Kulkarni
    PS, Butera ST, Reeves WC. BMC Infect Dis 2005, 5:78

    [4] Yousef GE, Mann GF, Smith DF, et al: Chronic enterovirus infection in
    patients with postviral fatigue syndrome. Lancet 1988;1:146-7.

    [5] Cunningham L, Bowles NE, Lane RJM, et al: Persistence of enteroviral RNA
    in chronic fatigue syndrome is associated with abnormal production of equal
    amounts of positive and negative strands of enteroviral RNA. J Gen Virol

    [6] Galbraith DN, Nairn C, Clements GB: Phylogenetic analysis of short
    enteroviral sequences from patients with chronic fatigue syndrome. J Gen
    Virol 1995;76:1701-7.

    [7] Lane RJ, Soteriou BA, Zhang H, et al: Enterovirus related metabolic
    myopathy: a postviral fatigue syndrome. J Neurol Neurosurg Psychiatry

    [8] Douche-Aourik F, Berlier W, Fe´asson L, et al: Detection of enterovirus
    to human skeletal muscle from patients with chronic inflammatory muscle
    disease or fibromyalgia and healthy subjects. J Med Virol 2003;71:540-7.

    [9] Chia JK, Chia A: Diverse etiologies for the chronic fatigue syndrome.
    Clin Infect Dis 2003;36:671-2.


    Other viruses and microbes are also worthy and studies that involve the gut
    may provide more information than studies that just use blood samples.

    Thank you for taking the time to read this.

    Tom Kindlon


    Appendix 1: Petition

    CDC CFS research should not involve the empirical definition (2005)
    The petition

    We call on the Centers for Disease Control and Prevention (CDC) to stop
    using the "empirical" definition[1] (also known as the Reeves 2005
    definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS

    The CDC claim it is simply a way of operationalizing the Fukuda (1994)
    definition[2]. However the prevalence rates suggest otherwise: the
    "empirical" definition gives a prevalence rate of 2.54% of the adult
    population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%)
    and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition
    was used in previous population studies in the US[4,5].

    The definition lacks specificity. For example, one research study[6] found
    that 38% of those with a diagnosis of a Major Depressive Disorder were
    misclassified as having CFS using the empirical/Reeves definition.


    [1] Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L,
    Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome--a
    clinically empirical approach to its definition and study. BMC Med. 2005 Dec

    [2] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The
    chronic fatigue syndrome; a comprehensive approach to its definition and
    study. Ann Int Med 1994, 121:953-959.

    [3] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey
    M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban,
    and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.

    [4] Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart
    JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and
    incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003,

    [5] Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR,
    McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue
    syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.

    [6] Jason, LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease
    Control's empirical chronic fatigue syndrome case definition. Journal of
    Disability Policy Studies 2008, doi:10.1177/1044207308325995.

    Further reading:
    Problems with the New CDC CFS Prevalence Estimates
    Leonard Jason, Ph.D., DePaul University i.e.

    Brief comment from Tom Kindlon: I have Chronic Fatigue Syndrome (CFS) for
    over 20 years.

    I want a lot of research progress in my lifetime and believe the empirical
    definition (2005) (also known as the Reeves definition (2005)) decreases the
    chances that this will occur: abnormalities that would show up using a more
  6. QuayMan

    QuayMan Member

  7. skeptik2

    skeptik2 Member

    What an amazing piece of work! Tom Kindlon is brilliant, there's no doubt about that.

    All of the results of surveys were astounding and very clear about the serious impact of Reeve's initiating the UKs CBS and GET guidelines in the U.S.

    I have only one question: The postings talk about CFS/ME; in the U.K. that is the norm, for now.

    When has the CDC ever, ever called this disease M.E.? They deny that this is our disease. They deny research that would prove it.
    They are a lie from beginning (1988) to now, in all that they do. They are not going to read these letters to any effect; oh, they may take note of them, but only a class action lawsuit of Congressional Inquiry will make them actually sit up and take notice, IMHO.


  8. QuayMan

    QuayMan Member

  9. aftermath

    aftermath New Member

    Excellent work on the part of those who participated.

    As I have long stated, we as the patient community are a complete disgrace with regard to advocating for ourselves, even considering our diminished capacity.

    I hate to tell people what they don't want to hear, but the fact is that this will remain an undiagnosable and incurable disease unless we force people to take action.

    Cort Johnson noted on his blog that a major physician referred to us as "cattle allowing themselves to be loaded into rail cars on the way to the slaughterhouse."

    I know that many of us are barely functional. Still, the fact that only 2-4% of patients participate in any of the national groups that are fighting for us is a disgusting.

    Instead of spending our time and money on doctor visit after doctor visit, hoping that we will find someone that can help us (in reality, no one can), we should be organizing behind campaigns like this one.

    Again, great job to those who participated. EVERY single person who has the energy to type a post on this forum should be getting involved the next time something like this comes around.
  10. QuayMan

    QuayMan Member

    CDC must drop the 1994 & 2005 criteria. In science there is no such thing
    as a consensus. The idea of consensus is even more absurd when the panel
    includes people who believe that the illness is organic and those who are
    convinced that it is a functional somatic syndrome. Professor Wessely made
    it very plain in his 1987 article that he thought that ME-CFS was a form of
    hysteria; indeed he called it such. What on earth were he and others who
    thought the same doing on the panel for a definition? No wonder it is so
    flawed. The group of psychiatrists continued the fiction that the illness
    was bogus in their 1990 Oxford Criteria. Though the Oxford criteria was
    seldom used it certainly was indicative of their view.

    Years ago we were told that if the field were broadened it would be easier
    to understand the illness. Hardly a scientific approach, and one which has
    proven, of course, to be false.

    CDC: start using the Canadian criteria.

    Dr Reeves must go. Surely the Whistle Blower Act which he used so cynically
    to keep his job has it¹s limitations.

    CDC: apologize for lying to Congress and for lying about lying to Congress
    about the financial diversions outlined in the GAO report. If CDC doesn¹t
    set a decent example why is anyone surprised that baseball players lie to

    CDC: stop tampering with WHO codes. When asked why they didn¹t code CFS to
    323.9 we were told that the coding wasn¹t retroactive. Now, in the ICD-10
    CDC has again refused to follow the rest of the world and code CFS to G93.3.
    What possible justification ­ except their own bias ­ do they have for this
    insistence on placing CFS in a nebulous category rather than following WHO?
    It is both absurd and insulting. They must code CFS to ME at G93.3. More
    and more studies have proven that the illness fits in the neurological

    When my 87 year old father goes to his neurological exams, I silently take
    them along with him. Count backwards from 100 by 7¹s..I can¹t do it either.
    Remember the name and address given by the doctor? Not me. In the last
    couple of years I have been a bit better than Dad ­ I do usually know what
    month it is, the day of the week, though, is hazy. And yes, I do know that
    we are at Mass General Hospital, and frequently I can touch my finger to my
    nose. Now of course the results of one patient are not going to convince
    all. The unusual findings in the spinal fluid, the well documented
    hypersensitivity to noise light and other stimuli justify putting CFS
    (Canadian criteria) under the neurological code.

    CDC: recommend neurological testing & study the neurological aspects of this

    The study of CFS by CDC has been so poor ­ nearly non existent ­ it calls
    into question the ability of the government to run a decent health care
    program. Surely every thinking person must have doubts, based on the
    irresponsibility of CDC and the lack of accountability and indeed the utter
    disregard of the law by CDC despite years and years and years of complaints
    from physicians and patients alike, of the government¹s ability to act
    responsibly for the health of it¹s citizens.

    24 years after the outbreaks all across the States and what does the CDC
    have to show for it? What has the CDC done which has helped ANY patient?

    Hundreds of thousands of people have lost their jobs, their families, been
    denied families, their liberty to this cruel illness. Some of us are still
    able to pursue happiness, but it is a very rarified form of happiness. We
    patients are not free to go about normal daily business. I am on the brink
    of having to go into assisted living at the age of 56. I cannot look after
    myself; I cannot cook for myself, or shop except on line. My social life has
    been all but curtailed. For the first time I signed up to go to my
    Wellesley reunion. I managed less than half of it and have been all but
    bed-bound. I have had this illness since I was six. That means 50 years. I
    was lucky that I was well enough to pass for nearly normal much of my life.
    Hospitalized for three weeks in 1969, I was given the diagnosis of post
    viral fatigue. I was not told what that meant. I continued, always pushing
    myself as hard as I could until my health broke again in 1980-81. In 1992
    after practicing martial arts to help with my misdiagnosed depression I
    finally collapsed with double pneumonia. I improved, and returned to my
    life¹s passion, the conservation of oil paintings, only to finally have what
    has been an irreversible breakdown in health in 1994. It¹s taken a long
    time to come to terms with that loss.

    The detrimental effects of exercise on ME-CFS patients has been proven; it
    must be studied more and publicized more. In my case it was the end of life
    as I knew it; I had clients from Paris to Hawaii, working for private
    clients and the Peabody Essex Museum, Salem MA, and truly loved my work. I
    had decided on that career as a sophomore in college, prepared myself for it
    taking courses at the Museum of Fine Arts, Boston, and independent study at
    MIT. I was the first person to use a scanning electron microscope and x-ray
    diffraction to study pigments. After college I went to England and became an
    apprentice. It¹s taken along time but finally I can look back at the work I
    did with as much pride as sorrow. I am proud that paintings I restored are
    in books & that I see reproductions of the paintings in unusual places ­
    like the set of JAG. But I confess I write this with tears in my eyes, for
    I truly loved my work, losing it has been devastating. I defined myself by
    my work, much as a doctor is defined by his or hers. It was not just a job.
    I keep hoping that I will be able to return to it. But that hope is getting

    CDC : Warn patients to be very careful with exercise; too much and they
    will be invalids indefinitely.

    I¹ve also lost my chance for motherhood. Earning a living, hobbled by ME
    took all my focus. Yes I dated but it was so difficult; my cognitive
    challenges kept getting in the way as did the need to focus my waking hours
    on my work. No one could understand the cognitive problems I have- myself
    included till I was diagnosed, no one could understand why I only eeeked out
    a living when clearly I was devoted to my work. Making the simplest decision
    is so difficult. Red flags to good men. But you Ironically, years and
    years ago, my college friends thought I would be the first to marry. My
    mother was afraid I would marry before finishing college. Perhaps if I had
    been properly diagnosed and told what the illness was about, what effect it
    would have on my abilities, things would have been different. Those losses
    are profoundly personal and frankly I cannot continue to discuss them.

    CDC: tell people about the disease so that they can have a chance at coping
    with it.

    Most devastating have been the deaths. The sudden death of a friend¹s
    child, the deaths of people I used to correspond with online, and closest to
    home, the death of a friend who lived near by. I used to phone to her every
    morning, and though she only lived about 1/4 mile away we seldom saw each
    other; neither of us was well enough to visit in the conventional sense. A
    talented, charming woman, she decided that there were fates worse than death
    and that the life she was living, with out hope for improvement, was
    unendurable. After a few days of not being able to reach her I called the
    police, and was transferred quickly to a senior officer who told me that my
    friend had hanged herself. She used to call me³ Pollyanna² because of my
    conviction that a treatment would be found and my general upbeat outlook. I
    still like to have fun.

    CDC : do meaningful research & fund promising private researcher¹s findings
    to give patients hope.

    There is that nasty co-relation to cancer, something not often spoken of,
    but that certainly exists.

    CDC: study the prevalence of cancer in patients diagnosed with ME

    Donald Henderson MD called this ³epidemic neuromyesthenia² There was a
    reason for that.

    CDC: study the transmissibility of this disease.
  11. QuayMan

    QuayMan Member

  12. QuayMan

    QuayMan Member

  13. QuayMan

    QuayMan Member

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