Re: ~*Online WACOC News 2006 September 11*~

Women and Children of CFIDS
WACOC

Send an Email for free membership


~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
>>>> Help ME Circle <<<<
11 September 2006 <<<<
Editorship : j.van.roijen @ chello.nl
Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

PERMISSION TO REPOST



Campaigning for Research into Myalgic Encephalomyelitis
RiME



Open Letter to AfME re. Clinics
~~~~~~~~~~~~~~~~~~~~~~~~


The letter below was sent to AfME 11/9/06.

If you have concerns, why not (1) Take them up with AfME (2)
Share them with us.

RiME will shortly publish a pro forma letter for MPs re. the
'CFS/ME' Clinics...

Please note: RiME is currently experiencing some technical
problems. It's not receiving incoming emails (been that way for
nearly a week). It appears to be a problem with the server.



Dear Ms Taylor,

AfME has launched a campaign to save the NHS 'CFS/ME'
Clinics. Your primary reason, for so doing, appears to be your
contention that they are in huge demand.

The Campaign Co-ordinator states in your 8/8/06 flier, '.... there
is overwhelming support from service users....' RiME asks:



1. What is the basis for this statement? Can you back it up with
statistical evidence?

2. Service users with what? The admittance criteria to the
CNCCs and satellites is loose and vague, meaning a wide
range of patients will attend. This point features relentlessly in
letters sent to RiME (www.erythos.com/RiME - Newsletters 6 +
7, Letters - Sept. 2006). Results, therefore, will be both skewed
and misleading.

3. If the services are so popular, then why doesn't AfME spell out
exactly what the treatment is? There is nothing specific in either
the Campaign Pack 8/8/06 or the AfME website in this respect.
By contrast, RiME's website details at considerable length why
PWME are opposed to the centres (Ibid).



On your website you refer to:

..... multiple interventions by specialists.... Can you be more
specific?

..... domicilary visits to the severely affected.... Evidence? How
exactly do they help?

The quotes in the info. pack are flimsy and specious. The quote
on the Kent + Sussex Services (see A) is totally at variance with
letters we get - A.

..... creating change from within is the way we can promote the
patient voice....

This is not the message we get. ME patient rep's say their
voices are not being heard - RiME Website, Ibid. The civil
servants who work for PCTs do essentially what they are told by
central govt ie implement the recommendations of the CMO
Report. This report associates ME with (1) inactivity and activity
avoidance (2) abnormal illness beliefs - to be combated by GE
and CBT respectively. If you think AfME or local groups are
securing improvements for PWME please tell us what they are?

..... the closure of these services will adversely affect biomedical
research into ME....

How exactly? We get the opposite impression. ME patients
believe that if MPs are told 'CFS/ME' patients are being treated
via the clinics, they might well think that biomedical research into
ME is unnecessary.

..... initial analysis shows they (the services) are very cost
effective....

Whose analysis? If the services are only about mangement, then
the above statement makes no sense. Long waiting lists and an
increased incidence of ME (as appears to be the case) would
suggest otherwise. If the Cost to the Nation is £6.4b, then why
isn't the Govt investing money in biomedical research. This way,
ME patients will have the chance to recover and take up/resume
a useful position in society?



Please answer the underlined questions. And please feel free to
comment on other points.



A Sussex and Kent Services (AfME flier 8/8/06)


''The response from service users has been overwhelmingly
positive. There was some concern that the Kent based service
was led by a psychologist but it has not been a major issue. It
seems generally recognised that the staff are all good people
and that they are, in effect, all we've got! Other issues relate to
the waiting list and the issue of accessibility. My view is that we
have actually made a damn good start. The services aren't all
singing and dancing but they are a good beginning, and we are
looking forward to helping them develop further''. (Author not
identified).

Well, the best one can say is 'oh dear'. This sort of 'bloated wind'
says just about nothing about the services? And it is certainly not
the message we get from people in both Kent + Sussex...



Selection of letters from Kent



Maidstone Newsletter Feb. 2006 - 'Saying No can be Positive'

'Saying No Can Be Positive' by CA is a paper.. designed to
support ME sufferers who choose not to attend the.. Chronic
fatigue clinics... across the country. These clinics have been
based upon the 2002 CMO's report which did not acknowledge
ME an organic condition of physical origin. The treatments
offered by the clinics are predominantly psychological therapies.
The paper may also suppport ME patients who refuse to
participate in the psychologically based PACE + FINE Trials set
up by the MRC. Bed and housebound sufferers who are advised
to have these therapies via domicilary visits may.. find it helpful.



Maidstone: .... I have received no practical support from my local
NHS services other than a recent referral to one of these clinics.
When I discovered that they were based entirely on a mental
health approach, I declined the invitation for an initial
assessment as I am patently not suffering from a mental health
illness.

ME is a neurological condition presenting many varied
symptoms, not just fatigue; a mental rehab approach is not only
ineffective but potentially harmful to sufferers. For this reason I
strongly oppose.. future funding of these clinics... Why is not
some or most of the funding available being spent on
biomedical research...



Chatham: The NHS clinics that are currently being set up, with
the blessing of the former Chair of the APPG on ME, will not be
admitting people who fit the Canadian definition of neurological
ME (enclosed) but with a range of illnesses and conditions,
some of which might respond to GE and CBT regimes. In Kent,
ME patients are being referred to CBT clinics. I condemn this
type of treatment, as does everyone else I know in Kent, and I
am personally leading a delegation of the 25% ME Group
against it. It is disingenuous of the Government to hail these
clinics as centres for the treatment of ME when clearly they have
nothing to offer the sufferers of this condition...

The low membership numbers of the two main ME charities and
their associated groups further represent the ME community's
disillusionment. These organizations have continually betrayed
ME patients, preferring to focus on those with fatigue states &
failing to listen to those who challenge and protest regarding
their actions....



Sevenoaks: .... ME and Chronic fatigue are being lumped
together.... The CFS Service says it will treat 'CFS/ME' with CBT
sessions.. by a psychologist.. This appears to have all the
hallmarks of the 'Wessely School of Psychiatrists'. There would
appear to be an erroneous assumption that PWME per se have
low self-esteem and motivation, and negative thoughts, and
therefore become inactive... this is not the case....



Meopham: .... The question of nomenclature is all-important and I
support, in this respect, the representations of the 25% Group. I
don't believe the Kent Health Authority should proceed any
further until this pivotal issue has been properly discussed and
resolved. Can you tell me please why the 25% Group is only
being heard at fringe meetings whilst the Sussex Group has
been awarded a place on the Steering Committee? The Sussex
representatives do not appear well-informed with their blind
adherence to CBT modes of treatment, are not representative of
ME patients in Kent...



Bromley: ....You think that the Sussex/Kent CFS/ME Group
represent 'the majority view'. I don't believe so. If 350 people in
Kent belong to their Group, this would represent less than 5% of
PWME in Kent... People from Kent who have observed the
leaders of the Sussex Group.. question... if they understand what
it is like to have ME. Many are horrified by the fact the former will
be on a Kent ME services Committee. Why were they appointed
to this committee? And who exactly are they representing. I
ask... (they) be replaced by people from Kent....

The recent 'Save the Clinics' Tosh disseminated by AfME is a
gross distortion of the facts. It is not only inaccurate and
misleading but disingenuous...


Selection of letters from Sussex


Brighton: .... I am very concerned by the lack of funding into this
Complex Multisystem Organic Disease. Surely a disease
characterised by such a range of disabling symptoms
desereves full investigations....

All patient surveys including those from AfME and the Sussex
ME Society show that GE/activity and CBT are the very
treatments that patients found least helpful and most harmful. So
it s astonishing that more than £8m of public money has gone
into funding treatment centres promoting GE and CBT, the very
psychosocial approaches that so many PWME including myself,
have been harmed by... There is an urgent need for clarity of
terms too. ME.. is WHO ICD classified as a neurological
disease. The term CFS is now used interchangably with 'chronic
fatigue' and then confused with various 'fatigue states', even in
medical journals....



Eastbourne: .... People I know with ME do not support the NHS
'CFS/ME' clinics which are currently being set up around the
country and which offer psychiatric/psychological models of
treatment. Someone with ME who attended the Maidstone CBT
clinic claims that they were subjected to a lecture by a
psychologist who talked about issues such as low self-esteem,
negative thoughts, abnormal illness beliefs... They didn't return.
And I think these clinics will be generally boycotted by ME
patients. People with other conditions, though, that would fit a
loose CFS definition will probably attend and some of these
might benefit > skewed results.

..... the number of people with ME who subscribe to the
Sussex/Kent Group would be a small minority... in both counties.
Those I know with ME want nothing to do with this Group.

Continuing on the issue of fairness, you (APPG Chair) have
invited Prof. Pinching to address the APPG next Tuesday re. the
NHS Clinics. He will most probably tell the attendees that
everything is going swimmingly well. Have you also invited a
party or parties who will put the other side of the coin eg RiME,
the 25% Group... or someone from a local Group who opposes
the new 'CFS/ME' unit in their area eg the neighbouring
Winchester + Eastleigh Group?



Rye: Yes, I would much prefer that public money was spent on
ME biomedical research as opposed to the mental rehab clinics
which will admit people with a vast range of conditions (and may
help some who don't fit neurological ICD Canadian ME). I don't
get good reports on the clinics in either Kent or Sussex from
PWME ...



Haywards Heath: It is v important that money allocated to... ME
be used to diagnose the physical causes of this v serious illness.
It is entirely evident that the present forms based on
psychological causes/treatment is just not working. The latest
span of clinics are an off-shoot of the already well-established
under the guidance of the 'global expert on ME' - Prof. SW...

... there is not a shred of evidence there has been any benefit
whatever to these individuals... patients are known to be coming
out of these clinics with a different name to their serious
symptoms...

My treatment as a nurse... instilled in us that patient needs come
first. This clearly is not happening.. Not only are patients' needs
not being met, these ill people are being brandished - bullied -
intimidated in the most pernicious way, by the profession trained
at the expense of the public purse...



Wadhurst: ... my daughter has been chronically affected with ME
and bed-ridden for fourteen years now. These new clinics have
nothing to offer people like her. We would much prefer that
public money was spent on biomedical research into ME ...




RiME 10 Carters Hill Close Mottingham SE9 4RS
rimexx @ tiscali.co.uk

www.erythos.com/RiME


~~~~


Thanks to all the patients world wide who continue to speaking up!
Research holds all our answers
Praying for world peace
How does a human heart hurt so deeply and still survive is beyond ME
CFIDS FM...
Together the patients can do it!!

Enjoy the sunsets and sunrises,

Diana Saba
Retired Nurse
FM ME/CFIDS
Related Neurological Disorders
CDC's Wm Reeves Must Go
Bring Back the GAO
Where did over 4 Million $'s of misappropriated funds go to?
CDC website linked NCF to Porn for over one year ~ Why?

Grassroots Action for Myalgic Encephalomyelitis / Chronic Fatigue
Syndrome
http://www.co-cure.org/Congressional_Action.htm

Please Support NCF's Research Plans
http://www.ncf-net.org/
http://www.ncf-net.org/Discoveries.htm

Please Sign Petitions
http://www.petitiononline.com/MEitis/petition.html
http://www.petitiononline.com.cfs2004/

May 12th Awareness Day
http://www.geocities.com/capitolhill/4277/

The One Campaign
http://www.one.org/

The HHV-6 Site
http://hhv6.freeservers.com/

Betrayal By the Brain:
The neurological basis of chronic fatigue syndrome, fibromyalgia
syndrome and related neural network disorders.
by Dr. Jay A Goldstein
http://home.vicnet.net.au/~mecfs/general/goldstein_summary.html

CFSAC Meeting Presentation ~ June 21, 2004
http://listserv.nodak.edu/scripts/wa.exe?A2=ind0407a&L=co-cure&F=&S=&P=541

~*I truly hope the January 2006 CFSAC meeting will be addressing our
continued efforts and concerns about our nations blood supply and FM
ME/CFIDS and all related neurological disorders*~

The January 10, 2006 CFSAC meeting did not take place
http://www.hhs.gov/advcomcfs

FM ME CFIDS Information Forum
Co-Cure Archives
http://listserv.nodak.edu/archives/co-cure.html

TCJRME
http://www.geocities.com/tcjrme/

Reading, Researching, Posting to AMF
1997-2006
http://hometown.aol.com/dgsaba/myhomepage/index.html

Type AMF Abusers into the google search engine box.
http://groups.google.com/group/alt.med.fibromyalgia/search?q=AMF+Abus...

Be safe...Be aware...Be alert...

"What lies behind us and what lies before us, are tiny matters,
compared to what lies within us" ~ Ralph Waldo Emerson

.

Relevant Pages

  • How Similar the World Is
    ... Patients, fearful of the stigma connected to mental illness, were ... treat patients suffering depression and anxiety. ... anxiety and sends them to six community health clinics in Goa, ...
    (uk.people.support.depression)
  • Re: ~*Online WACOC News 2006 September 22*~
    ... Letter for MPs re. NHS 'CFS/ME' Clinics ... which offer psychiatric/psychological models of treatment. ... ME patients concerns are well documented - see RiME ...
    (alt.med.fibromyalgia)
  • Re: ~*Online WACOC News 2006 September 22*~
    ... Letter for MPs re. NHS 'CFS/ME' Clinics ... which offer psychiatric/psychological models of treatment. ... ME patients concerns are well documented - see RiME ...
    (alt.med.fibromyalgia)
  • Re: Late-stage cancer patients flock to Mexico
    ... Late-stage cancer patients flock to Mexico ... People seek treatments that are shunned and prohibited in the U.S. ... patients have flocked to clinics south of the border ...
    (misc.health.alternative)