(May be re-posted)
(Part 1 of 4 - other parts below)
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 reactions.
I'm saying that in this situation, surveys of patients' experiences are important. 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 the 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 http://CFSdefinitionpetition.notlong.com i.e. http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/ . 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.
Thanks,
Tom Kindlon
==========================================================
Don't support the Reeves/empirical definition/criteria for CFS?
Sign the petition at: http://CFSdefinitionpetition.notlong.com
==========================================================
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
317):
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%).
(to be contd)=================
(Part 1 of 4 - other parts below)
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 reactions.
I'm saying that in this situation, surveys of patients' experiences are important. 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 the 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 http://CFSdefinitionpetition.notlong.com i.e. http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/ . 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.
Thanks,
Tom Kindlon
==========================================================
Don't support the Reeves/empirical definition/criteria for CFS?
Sign the petition at: http://CFSdefinitionpetition.notlong.com
==========================================================
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
317):
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%).
(to be contd)=================