May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

Help with Media Mission re PACE trial

Discussion in 'General ME/CFS News' started by Luelma, Dec 1, 2015.

  1. Luelma


    Can anyone help with any of these three queries:

    1) Can anyone find out the Physical Function scores (SF-36 scores) of other serious illnesses eg Multiple sclerosis.

    The mean score for Congestive heart failure and Hepatitis C are 79.2 and 79.3 whereas CFS patients in the PACE trial were classed as "back to normal" aka 'cured/recovered' if they achieved a score of 60.
    I need help finding a few more scores of some other serious illnesses.

    I am stupidly disabled/unable to look at a screen for days on end, unable to sit up in bed and constantly besieged by violent and varied pain etc attacks but I remain determined to continue with the seven months work Ive done (in ever-diminishing windows) to extract the most compelling, shocking and powerful facts relating to the PACE trial as put forward by David Tuller, Malcolm Hooper etc.

    My aim is to pitch to one of the newspapers I used to write for before CFS ended my life (Guardian, Daily Mail, Daily Telegraph etc) to get as much of the PACE story as possible out in the mainstream media but I'm in need of some help!

    See question number 2. below

    2.) Do any of you, or your loved ones, have some artistic/graphic design skills that could be put to use to create a powerful visual that will illustrate the most shocking discrepancies and errors with the PACE trial?

    I'm some distance off pitching yet but I wish to send two tables with my pitch that I hope will then be used in a future article.
    I believe two separate simple but visually compelling tables with the scores of the Six Minute Walking Test and the SF-36 Physical Function scores could really help underline just how ludicrous the PACE findings were in a way words alone cannot.

    I've no artistic or IT-design skills and don't have a clear idea of how this should look so would welcome thoughts from a capable soul who could perhaps draw a cartoon or simple drawing to represent the following groups:

    An 80 year old woman,
    Someone with either chronic obstructive pulmonary disorder (needing an oxygen tank) Or a patient qualifying for a lung transplant
    Someone with traumatic brain injury (over-simplistic, of course, but the idea is just to provide light-hearted representation figures perhaps a cartoon figure with a massive bandage around their head?!)
    Someone with chronic heart failure
    And then CFS patients in the CBT and GET arms (note average age in the trial was just 38)
    In the column next to each of these groups would be the average distance they can walk in a six minute walking test.

    NB I am missing the baseline scores of the CBT PACE group and don't have the score for someone with traumatic brain injury - do let me know if you are able to help with these. I have all the other scores.

    The second table would illustrate Physical function scores and
    should illustrate :
    Someone with full healthy physical function who scores 100
    Someone with a score of 85 (original discarded recovery score)
    A congestive heart failure patient 79.2
    Preferably the score for patient(s) with one or two recognised other serious illnesses
    A representation of someone with "severe problems with physical function* aka disabled enough to enter the trial 65
    and a CFS patient with a score of 60 who is meant to represent recovery aka 'back to normal'!

    *as defined by the European Journal of Public Health

    3.) There is an excellent thread with Simon Wessley quotes from many of his studies but I am looking for similarly compelling quotes that are dismissive and disregarding or CFS/ME from any of the past studies that the main PACE trial authors were involved (ie White, Sharpe and Chalder)

    Anyone who can help or has suggestions please private message me.

    (please forgive slow responses which are only ever due to extreme paralysing pain and other symptoms!)
    Valentijn, SOC, Sean and 3 others like this.
  2. Esther12

    Esther12 Senior Member

    @Graham has done some good work on illustrating concerns about PACE for a mass audience. I expect he would be happy to have you take anything you want from that.
    worldbackwards likes this.
  3. Graham

    Graham Senior Moment

    Sussex, UK
    Hi Luelma. Here's a file with some more sf-36 scores:

    Here's a link to the 8 videos a group of us produced. If any of the graphics grabs you, it's easy to give you a copy. If any of them can be modified to produce what you want, that can be done too. But although I can produce other graphics for you, I would need a much more specific brief. They would be "maths teacher's graphics" though, rather than "skilled graphics designer graphics".

    Finally here is a graphic that I produced for people to show their GPs if they wanted to talk about PACE claiming that CBT and GET are effective.

    Is that enough to start with? Good luck, and sorry to hear that you are struggling so much.

    Attached Files:

  4. biophile

    biophile Places I'd rather be.

    Some mean+/-SD scores based on the medical conditions discussed above:

    6MWD scores comparable to post-trial GET (379+/-100m)

    392±85m - females aged 80-89 years (n=15) from a cohort of independent/self-reliant "older adults who were in fairly good health"

    400m - "a reasonable marker" for when a patient should be listed for lung transplantation, based on a study of 145 patients with various lung diseases

    366±133m - a cohort of elderly patients aged 66±9yrs in "a wide range of COPD stages" (n=1379)\

    368±79m vs 403±82m - females n=34 aged 67±8yrs from a larger cohort (n=124, 90M+34F) with "moderate to severe COPD"

    438±99m - an elderly cohort aged 73±8years with COPD (n=17)

    393±115m - patients (n=1083, 11 studies) from a diverse range of cardiopulmonary disorders: end stage lung disease, dilated cardiomyopathy, congestive heartfailure, pulmonary hypertension, chronic obstructive pulmonary disease, interstitial lung disease; [range, 294±139m (ESLD) to 463±107m (DC)]

    403±105m - traumatic brain injury

    448+/-92 vs 410+/-126 m - two cohorts of patients (grouped according to outcome, n=74 vs n=47) with NYHA class II or III chronic heart failure caused by systolic dysfunction

    402m (class III heart failure), 558m (class II heart failure), 683m (healthy controls)

    Now, PACE will try to say that their 6MWD scores are unreliable because they didn't do it properly. But the reasons they cite only account for a small difference (e.g. a few tens of meters), not the massive difference we see in the PACE trial between patients and healthies (two or three hundred meters). Perhaps there is a fear avoidance of objective outcomes?
    Last edited: Dec 2, 2015
  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    @ballard has put together some stunning visual representations of ME/CFS.

    Click on the tab that says Graphics 1 & 2 to see her drawings.

    Is there any particular reason why you want private messages versus having people reply openly in this thread? By having people respond in an open forum, there will be less duplication of effort. For instance, I'm sure I wouldn't be the only person who might recommend ballard to you.
    Last edited: Dec 1, 2015
    Valentijn and ahimsa like this.

See more popular forum discussions.

Share This Page