Chair of APPG Inquiry into NHS Service Provision C/O Dr Des Turner's office
House Of commons
London
SW1A 0AA
Dear Chair,
We feel it important to bring to your attention the statement below. We = would also like you to note the events that took place which led to the = statement being drawn up, and the subsequent support it received from = approximately five hundred members of the ME community, despite the = limited time scale available. Although almost two years has now passed, = the same concerns mentioned within the statement are still very evident: = It is clear to us from the feedback we receive that many members of the = ME community remain unhappy at the lack of decent critical appraisal = from within Westminster regarding the setting up and continuation of the = controversial NHS CFS/ME clinics; and also there is a belief that any = Inquiry undertaken in the present climate will further endorse the = psychosocial approach currently favoured as best practice.
Yours sincerely
Angela Kennedy
Ian McLachlan?
A Need of Accountability and a Firm Resolution
Following the events of the APPG meeting of July 12th, and the official = minutes that followed, it has become clear that there is a high amount = of dissatisfaction with or objection to the approaches of the majority = of the NHS 'CFS/ME' clinics amongst the ME/CFS community, and that this = fact was not properly recognised at the APPG meeting for a number of = reasons. Ian and I feel that if the objections people have to these = clinics are prevented from being aired and formally acknowledged, the = current situation, by which the only 'treatments' being offered by the = clinics are those psycho-social in nature, with serious physiological = impairments being trivialised and/or ignored, is likely to become more = and more entrenched as 'best practice', with disastrous results for the = community on an individual and collective basis. With this in mind, it = is proposed that a formal statement is delivered to the APPG, (both as = written communication to the chair, and as an oral statement read out at = the next APPG meeting under 'Any Other Business) to register objections = to this state of affairs. We feel it vital that people who share the = same concerns should be given an opportunity to become co-signatories to = the statement if they wish.
The statement will be as follows:
STATEMENT TO THE APPG
"We are a group of individual people suffering from or closely connected = to someone suffering from Myalgic Encephalomyelitis, also known as = Chronic Fatigue Syndrome; an illness classified as neurological by the = World Health Organisations ICD-10 under code G93.3.
We advise the APPG today of the following:
From the evidence available, it has become apparent that the majority of = NHS 'CFS/ME' clinics do not adopt a suitably biomedical approach towards = M.E. sufferers. Instead, these clinics inappropriately focus on a = Cognitive Behavioural Therapy approach, some combined with Graded = Exercise Therapy approaches, neither of which has been shown to be = effective treatments for M.E. sufferers, and for which there is evidence = of potential risk to patients from both treatments.
We advise you that, by not focusing on a biomedical approach to = diagnosis and treatment/support, and by focusing on controversial = psycho-social treatments, such clinics are causing M.E. sufferers to be = put at risk, both physically and psychologically. We therefore feel the = approaches of these clinics are inappropriate for M.E patients.
In addition we remind the APPG of its duty to safeguard the interest of = ME sufferers, and ask that it immediately clarifies its ambiguous = position of supporting the setting up and continuation of the CFS/ME = clinics - especially as that support is also being given on the = extremely vague pretext that they are 'a base to build from', despite = all evidence to the contrary. We also remind the APPG that their remit = is to support, only the WHO code G93.3 of ME/CFS, and therefore believe = an unequivocal position of insistence on only a biomedical approach = should have been taken from the outset.
We trust that the APPG will now acknowledge that there are, within the = ME/CFS community, serious concerns about and objections to the = approaches of the majority of the NHS 'CFS/ME' clinics, and have this = formally entered in the minutes."=20
STATEMENT ENDS
Unlike other petitions that might be more generalised, this is a = single-issue campaign. The bottom line is, if, from the evidence = available, you have come to the conclusion that THE MAJORITY of NHS = 'CFS/ME' clinics are inappropriately focusing on a psycho-social CBT/GET = approach, and LACKING in a very necessary biomedical approach to the = illness Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome WHO ICD 10 = 393.3, and you wish to register your objection to this situation = formally to the APPG, then by putting your name as co-signatory to this = statement, you are registering your objection to this situation only.
The purpose of this statement is to ensure that the APPG formally = recognise that there are many people who DO object to the current = approach of the majority of the NHS clinics, a situation implicitly = denied in the minutes of the APPG meeting of July 12th, and are formally = reminded of their duties to safeguard the interests of ME/CFS sufferers, = in acknowledging the objections formally. Your agreement or disagreement = with other people (including this campaign's co-ordinators) on other = issues is not at stake here. Becoming a signatory to the above statement = in no way implies agreement with any other campaign of any other = co-signatory or co-ordinator. If you become a co-signatory to this = letter, your full name will be listed at the bottom of the statement = delivered to the Chair and other members of the APPG. Your name will not = be read out at the APPG meeting, although the amount of co-signatories = will be stated at this meeting.
To become a co-signatory to this letter, please email to either Ian or I, as soon as possible. It is = intended to deliver this statement to Des Turner, Chair of the APPG = before the next APPG meeting in November 2007.
(another complete waste of money that could have gone to biomedical research. How about a study to prove that the psychiatrists paid to deny our physical illness exists all have specific personalities?)
Subject: RES: Use of the Temperament and Character Inventory (TCI) for assessment of personality in chronic fatigue syndrome
Use of the Temperament and Character Inventory (TCI) for assessment of personality in chronic fatigue syndrome.
Authors: Van Campen E, Van Den Eede F, Moorkens G, Schotte C, Schacht R, Sabbe BG, Cosyns P, Claes SJ.
Affiliation: Dept. of Psychiatry, Antwerp University Hospital, Antwerp, Belgium.
NLM Citation: PMID: 19377023
BACKGROUND: Chronic fatigue syndrome (CFS) is characterized by severe and prolonged fatigue, along with a set of nonspecific symptoms and signs, such as sore throat, muscle pain, headaches, and difficulties with concentration or memory.
OBJECTIVE: The study examined whether CFS is associated with specific dimensions of Cloninger's psychobiological model of personality.
METHOD: Personality profiles were compared between 38 CFS patients and 42 control subjects by means of the Temperament and Character Inventory (TCI).
RESULTS: The CFS group showed significantly higher scores on Harm-Avoidance and Persistence.
CONCLUSION: The current study shows a significant association between specific personality characteristics and CFS. These personality traits may be implicated in the onset and/or perpetuation of CFS and may be a productive focus for psychotherapy.
For those who want to co-sign this letter:
ReplyDeleteChair of APPG Inquiry into NHS Service Provision
C/O Dr Des Turner's office
House Of commons
London
SW1A 0AA
Dear Chair,
We feel it important to bring to your attention the statement below. We =
would also like you to note the events that took place which led to the =
statement being drawn up, and the subsequent support it received from =
approximately five hundred members of the ME community, despite the =
limited time scale available. Although almost two years has now passed, =
the same concerns mentioned within the statement are still very evident: =
It is clear to us from the feedback we receive that many members of the =
ME community remain unhappy at the lack of decent critical appraisal =
from within Westminster regarding the setting up and continuation of the =
controversial NHS CFS/ME clinics; and also there is a belief that any =
Inquiry undertaken in the present climate will further endorse the =
psychosocial approach currently favoured as best practice.
Yours sincerely
Angela Kennedy
Ian McLachlan?
A Need of Accountability and a Firm Resolution
Following the events of the APPG meeting of July 12th, and the official =
minutes that followed, it has become clear that there is a high amount =
of dissatisfaction with or objection to the approaches of the majority =
of the NHS 'CFS/ME' clinics amongst the ME/CFS community, and that this =
fact was not properly recognised at the APPG meeting for a number of =
reasons. Ian and I feel that if the objections people have to these =
clinics are prevented from being aired and formally acknowledged, the =
current situation, by which the only 'treatments' being offered by the =
clinics are those psycho-social in nature, with serious physiological =
impairments being trivialised and/or ignored, is likely to become more =
and more entrenched as 'best practice', with disastrous results for the =
community on an individual and collective basis. With this in mind, it =
is proposed that a formal statement is delivered to the APPG, (both as =
written communication to the chair, and as an oral statement read out at =
the next APPG meeting under 'Any Other Business) to register objections =
to this state of affairs. We feel it vital that people who share the =
same concerns should be given an opportunity to become co-signatories to =
the statement if they wish.
The statement will be as follows:
STATEMENT TO THE APPG
"We are a group of individual people suffering from or closely connected =
to someone suffering from Myalgic Encephalomyelitis, also known as =
Chronic Fatigue Syndrome; an illness classified as neurological by the =
World Health Organisations ICD-10 under code G93.3.
We advise the APPG today of the following:
From the evidence available, it has become apparent that the majority of =
NHS 'CFS/ME' clinics do not adopt a suitably biomedical approach towards =
M.E. sufferers. Instead, these clinics inappropriately focus on a =
Cognitive Behavioural Therapy approach, some combined with Graded =
Exercise Therapy approaches, neither of which has been shown to be =
effective treatments for M.E. sufferers, and for which there is evidence =
of potential risk to patients from both treatments.
We advise you that, by not focusing on a biomedical approach to =
diagnosis and treatment/support, and by focusing on controversial =
psycho-social treatments, such clinics are causing M.E. sufferers to be =
put at risk, both physically and psychologically. We therefore feel the =
approaches of these clinics are inappropriate for M.E patients.
In addition we remind the APPG of its duty to safeguard the interest of =
ME sufferers, and ask that it immediately clarifies its ambiguous =
position of supporting the setting up and continuation of the CFS/ME =
clinics - especially as that support is also being given on the =
extremely vague pretext that they are 'a base to build from', despite =
all evidence to the contrary. We also remind the APPG that their remit =
is to support, only the WHO code G93.3 of ME/CFS, and therefore believe =
an unequivocal position of insistence on only a biomedical approach =
should have been taken from the outset.
We trust that the APPG will now acknowledge that there are, within the =
ME/CFS community, serious concerns about and objections to the =
approaches of the majority of the NHS 'CFS/ME' clinics, and have this =
formally entered in the minutes."=20
STATEMENT ENDS
Unlike other petitions that might be more generalised, this is a =
single-issue campaign. The bottom line is, if, from the evidence =
available, you have come to the conclusion that THE MAJORITY of NHS =
'CFS/ME' clinics are inappropriately focusing on a psycho-social CBT/GET =
approach, and LACKING in a very necessary biomedical approach to the =
illness Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome WHO ICD 10 =
393.3, and you wish to register your objection to this situation =
formally to the APPG, then by putting your name as co-signatory to this =
statement, you are registering your objection to this situation only.
The purpose of this statement is to ensure that the APPG formally =
recognise that there are many people who DO object to the current =
approach of the majority of the NHS clinics, a situation implicitly =
denied in the minutes of the APPG meeting of July 12th, and are formally =
reminded of their duties to safeguard the interests of ME/CFS sufferers, =
in acknowledging the objections formally. Your agreement or disagreement =
with other people (including this campaign's co-ordinators) on other =
issues is not at stake here. Becoming a signatory to the above statement =
in no way implies agreement with any other campaign of any other =
co-signatory or co-ordinator. If you become a co-signatory to this =
letter, your full name will be listed at the bottom of the statement =
delivered to the Chair and other members of the APPG. Your name will not =
be read out at the APPG meeting, although the amount of co-signatories =
will be stated at this meeting.
To become a co-signatory to this letter, please email to either Ian or I, as soon as possible. It is =
intended to deliver this statement to Des Turner, Chair of the APPG =
before the next APPG meeting in November 2007.
Angela Kennedy angela.kennedy@virgin.net
Ian McLachlan im012c1136_4@blueyonder.co.uk
_________________
(another complete waste of money that could have gone to biomedical research. How about a study to prove that the psychiatrists paid to deny our physical illness exists all have specific personalities?)
ReplyDeleteSubject: RES: Use of the Temperament and Character Inventory (TCI) for assessment of personality in chronic fatigue syndrome
Use of the Temperament and Character Inventory (TCI) for assessment
of personality in chronic fatigue syndrome.
Journal: Psychosomatics. 2009 Mar-Apr;50(2):147-54.
Authors: Van Campen E, Van Den Eede F, Moorkens G, Schotte C, Schacht
R, Sabbe BG, Cosyns P, Claes SJ.
Affiliation: Dept. of Psychiatry, Antwerp University Hospital,
Antwerp, Belgium.
NLM Citation: PMID: 19377023
BACKGROUND: Chronic fatigue syndrome (CFS) is characterized by severe
and prolonged fatigue, along with a set of nonspecific symptoms and
signs, such as sore throat, muscle pain, headaches, and difficulties
with concentration or memory.
OBJECTIVE: The study examined whether CFS is associated with specific
dimensions of Cloninger's psychobiological model of personality.
METHOD: Personality profiles were compared between 38 CFS patients
and 42 control subjects by means of the Temperament and Character
Inventory (TCI).
RESULTS: The CFS group showed significantly higher scores on
Harm-Avoidance and Persistence.
CONCLUSION: The current study shows a significant association between
specific personality characteristics and CFS. These personality
traits may be implicated in the onset and/or perpetuation of CFS and
may be a productive focus for psychotherapy.
All too familiar!!
ReplyDeletePeter Topperwien
www.petertopperwien.com