CFS: 4 More Days to Write CDC!

Discussion in 'Fibromyalgia Main Forum' started by denis321, Jun 25, 2009.

  1. denis321

    denis321 New Member

    Just a reminder to folks that the CDC will continue to take comments on its five-year research plan until JUNE 30, 2009.

    It's Action #4 on the CFIDS Association of America Link:

    This is especially important as the CDC's CFS sector head, William Reeves, continues to lump CFS in with psychological disorders??????????????????????????????????????????????. Dr. Reeves also spoke about collaborating with the Mayo Clinic on CBT/GET studies. As some who have gone to the Mayo Clinic have posted, they have NOT been helpful to many with CFS.

    If you're like me - someone who has no psych history and was enjoying life fine before coming down with?????????????????????????????????????????????????????????????????????

  2. mbofov

    mbofov Active Member

    I just received an e-mail from the CFIDS association today about this. It's very very easy to take action, send the e-mail they provide you with your own input, and very very important -

  3. 3gs

    3gs New Member

    I keep going to the site and cant find the e-mail to send. guess I'm having a bad brainfog day.

    can u tell what I'm doing wrong?
  4. frickly

    frickly New Member

    Sent my email to the CDC and my reprensentatives today.
  5. mezombie

    mezombie Member

    Here's the link again:

    If you have problems, just go to and click on the lower left of the page. I think it says Grassroots Action Center.

    You can also write your own email and sent it to to

    There's a whole bunch of comments made to the CDC on Quayman's thread about the CDC plan if you're looking for some ideas regarding what to write.
    [This Message was Edited on 06/26/2009]
  6. simpsons

    simpsons Member

    this email was on co cure today if any of the links help.

    Tell planners that the status quo isn't good enough

    Take Action! Visit this page:]

    For nearly two years, the CFIDS Association of America has been
    working to effect a more robust research effort at CDC. In spite of
    these diligent ongoing efforts, the past two years of dialogue and
    public testimony has produced a 5-year draft plan from CDC that is
    substantially the same as what CDC has been reporting since 2006.
    Status quo. Groundhog day. Déjà vu. All over again.

    In response to CDC's request for input on its draft plan (posted at, the
    CFIDS Association has prepared a detailed
    response, making both criticisms and recommendations for how one-half
    of the nation's investment in CFS research will be spent through 2013.
    Our letter is posted at for your
    review. We have used many of CDC's public
    reports to document the lack of progress and failure of the program's
    leadership to meaningfully advance practice and prevention to improve
    patients' lives.

    To shift the dialogue and demonstrate a more united front of the
    research, clinical and patient support communities against the status
    quo, we invite you to "endorse" our letter by sending your
    own message of support to CDC at or by
    responding to this Action Alert!

    The deadline for comments is Tuesday, June 30. CDC has committed to
    keep its e-mail address functioning after this date, so even if you
    can't act before June 30, please do so as soon as possible. Share this
    message with friends and family and ask them to do the same.

    $20 million spent over the next five years is hardly sufficient to
    address the public health challenges that CFS presents, but it's too
    much money to waste on a weak, ineffective CDC research plan.

    K. Kimberly McCleary
    President & CEO
    The CFIDS Association of America

  7. 3gs

    3gs New Member

    Thanks for help everyone. you are all great in willing to help!
  8. isiselixir

    isiselixir New Member

    I sent mine and noticed you can email up to six other people, if everyone does this it will really help!
  9. Sturg

    Sturg New Member

    I too sent in my email... it really was easy. Thanks for the link!
  10. bjsmit1

    bjsmit1 New Member

    Thank you all who have written the CDC about their 5 year research plan. I can not describe how important this is, and I plead with everyone to tell the CDC that we will not accept such a deplorable plan.

    The CDC has victimized millions of Americans over the last 20+ years, and their most recent 5 year outline will only continue to harm patients, families, and our collective cause to achieve better diagnostic measures, improved treatment options, and ultimately a cure.

    If you are able to, please contact the CDC CFS Research Program, via several avenues, including facebook,, the Grassroots Action Center, or by emailing the CDC, endorsing the letter that the CFIDS Association sent. The following url's can point you in the right direction.

    CFIDS Association's letter to the CDC:

    Email address to endorse the letter sent by the CFIDS Association:

    Gassroots Action Center:

    CFIDS Association's facebook page:

    Please act soon, as the deadline is Tuesday, June 30th. Thanks in advance for any and all support.

    Brian Smith

  11. bjsmit1

    bjsmit1 New Member

    Please help to keep this topic near the top so that others have a chance to respond to the CDC. Every effort counts.

    Thanks in advance.
  12. konijn

    konijn New Member

  13. mezombie

    mezombie Member

  14. konijn

    konijn New Member

  15. LonelyHearts

    LonelyHearts New Member

  16. LonelyHearts

    LonelyHearts New Member

  17. 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.
  18. QuayMan

    QuayMan Member

    (Originally posted on Co-Cure)

    -----Original Message-----
    From: ME/CFS and Fibromyalgia Information Exchange Forum [mailto:CO-CURE@LISTSERV.NODAK.EDU] On Behalf Of Tom Kindlon
    Sent: 29 June 2009 20:29
    Subject: [CO-CURE] ACT: Results from 10 ME/CFS surveys from the past and a request for further information

    (May be re-posted)

    I'm just doing a relatively quick submission to the CDC on their 5-research
    plan which involves an estimated budget of US$20m over that period. Bill
    Reeves seems to have been taken
    in the proponents of the therapies, Graded Exercise Therapy (GET) and CBT
    based on GET. I am thus concentrating largely on this issue so they will
    have been warned if they then promote dangerous treatments especially if
    they do it without warnings.

    I'm pointing out that with pharamaceutical drugs reports of adverse reaction
    are taken seriously and that warnings are given out about these adverse
    reactions (or in some cases drugs are taken off the market if the
    risk/benefit ratio is unsatisfactory). However, with
    non-pharmaceutical interventions (particularly for CFS) information is
    rarely if ever formally
    collated and also generally it is less easy for patients to report adverse

    I'm saying that in this situation, surveys of patients' experiences are
    I'm including details from 10 from the following countries: UK (6), the
    Netherlands (2), Norway (1), USA (1).

    I'm appending what I've written on the surveys below. If anyone has
    information on other surveys, feel free to send them on. I will probably
    send out my completed submission so people will then see a fuller list of
    surveys if I have missed some.

    Even if people don't get to write to me in the next 24 hours, I will still
    be interested in other data.

    I'm also pointing out that the CFS experts the CDC are using from the UK and
    Netherlands may not be telling them about the reports of adverse reactions
    in their countries.

    (By the way, I am also highlighting the petition on the CDC's empirical
    definition i.e. . It's
    at 1433 signatures now - it'd be "nice" to have over 1500
    when I send it in in 24 hours but that may not happen).

    If time allows, I may also do a very quick submission to the UK's APPG
    Review pointing out the need for a system where ME/CFS patients can report
    adverse reactions to treatments - if I do this, I'll include the data from
    surveys to show the need for such a system.


    Tom Kindlon
    Don't support the Reeves/empirical definition/criteria for CFS?
    Sign the petition at:

    Extract from my draft submission on CDC's Draft 5-year Strategic Plan

    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.

    Therapy* Respondents Helpful No change Made worse
    Drug medication for pain 1394 61% 28% 11%
    Drug medication for sleep 1300 67% 17% 16%
    Pacing your activities 2180 89% 9% 1%
    Graded exercise 1214 34% 15% 50%
    Diet changes 1864 65% 32% 3%
    Nutritional supplements 1953 61% 36% 3%
    Rest, including bed rest 2162 91% 8% 1%
    Cognitive Behavioural Therapy 285 7% 67% 26%
    Other 878 76% 11% 14%

    *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

    Helpful No change Made worse
    Drug medication for pain 61% 28% 11%
    Drug medication for sleep 67% 17% 16%
    Pacing your activities 89% 9% 2%
    Graded exercise 34% 16% 50%
    Diet changes 65% 32% 3%
    Nutritional supplements 62% 36% 3%
    Rest, including bed-rest 91% 8% 1%
    Cognitive behavioural therapy 7% 67% 26%
    Other 75% 11% 14%
    [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)

    Helpful no effect made me worse didn't try
    CBT 15.5% 17.5% 7% 60%
    GET 5% 6% 32% 57%
    Graded Activity 18% 8% 30% 44%
    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)

    The odd proponent of GET has 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. Patients were asked who provided the GET
    treatment. Of the 567 who answered this question, 181 (31.92%) 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; these are very similar percentages to the
    subgroup of 335 patients who 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 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 ; Ellen Goudsmit PhD
    CPsychol AFBPsS (a Chartered Health Psychologist) ellengoudsmit@HOTMAIL.COM
    ; Abhijit Chaudhuri DM MD PhD FACP FRCP (a consultant neurologist) 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
    four 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.

    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 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%


    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*. 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%).


    [This Message was Edited on 06/30/2009]
  19. AuntTammie

    AuntTammie New Member

    I totally understand that some are not able to write their own letters, but anyone who is able to get online should be able to simply sign the CFIDS association's already written letter. It is really important that as many as possible do this. Please, please do so.

  20. AuntTammie

    AuntTammie New Member

    I think it's a great thing to send with a lot of relevant data.....I am a little confused, though, as to why the last survey says that in the US, CBT is only based on GET. This is absolutely not true. Maybe they mean that the people surveyed were only receiving CBT based on GET, or maybe they mean only people who were getting CBT thru psychiatrists.......I know for a fact, though, that counselors (very different than psychiatrists) in the US do use CBT to help with coping with having chronic illnesses (inc ME/CFS), they use it for helping clients to deal with relationship issues that arise from having a chronic illness, they use it to help work on pacing, etc.....there are lots of other ways of using it that are actually helpful and have nothing to do with GET. I agree that using it solely as an adjunct to GET is not helpful and actually harmful for many people with ME, and I am totally opposed to that being the treatment of choice....but I do think that using it for other purposes can be very helpful.

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