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- 14
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:
a.) RE SIX MINUTE WALKING TEST
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.
b.) PHYSICAL FUNCTION 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!)
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:
a.) RE SIX MINUTE WALKING TEST
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.
b.) PHYSICAL FUNCTION 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!)
