--- In [email protected], "Charles Shepherd"
<charles.c.shepherd@...> wrote:

MAY BE REPOSTED


Dear Professor Borysiewicz


Five years ago on this day BBC News reported on the MRC research
strategy for ME/CFS.  The news item - 'ME research action plan
revealed' - can still be accessed at:
http://news.bbc.co.uk/go/em/fr/-/1/hi/health/2581153.stm


The MRC announcement brought real hope to thousands of people with
ME/CFS, along with the expectation that MRC funding would now be
directed towards the underlying cause of this illness as well as
investigating forms of treatment that are not based on the deeply
flawed psychosocial model of causation.

Instead, all that has happened for the past 5 years is the
allocation of MRC funding to yet more studies into behavioural
treatments (ie the FINE and PACE Trials) that are largely based on
the idea that ME/CFS is maintained by abnormal illness
beliefs/behaviour and deconditioning.

Not surprisingly, people with ME/CFS feel badly let down and angry -
especially when a succession of proposals looking at causation have
been turned down by the MRC and promising new research initiatives,
such as the studies into gene expression being carried out by
Professor John Gow and Dr Jonathan Kerr, are having to be funded by
the medical charities, including the ME Association.

We presume you are aware that MPs are now so concerned about the
current situation that a House of Commons Adjournment Debate is
being sought for the New Year.

We appreciate that you have only recently taken over as Chief
Executive at the MRC.  Could we therefore ask that you take this
opportunity to look again at the way in which current systems are
not resulting in research initiatives into causation and non
behavioural forms of treatment being funded by the MRC.  One very
simple and cheap way to start 2008 would be for the MRC to place
announcements in the Lancet and other medical journals making it
clear that the MRC would very much welcome good quality research
proposals in the areas that we refer to.  We know from our own
experience as a medical charity which funds research that this can
be a very effective way of encouraging new research applications.

We would also be grateful if you would agree to meet with ME
Association representatives in the New Year to discuss our concerns.


Yours sincerely


Neil Riley
Chair

Dr Charles Shepherd
Hon Medical Adviser


ME Association
4 Top Angel
Buckingham MK18 1TH

Website: www.meassociation.org.uk




[Non-text portions of this message have been removed]

--- End forwarded message ---

Hello all,

As you will see from the following, MPs who represent members of our Group have been informed of the date of the next All Party Parliamentary Group on ME meeting.

Please encourage your MP to become involved in this Group.

Many thanks

Jill

Jill Pigott <[email protected]> wrote: Date: Sun, 16 Dec 2007 22:41:51 +0000 (GMT)
From: Jill Pigott <[email protected]>
Subject: APPG on ME - Tuesday 22 January
To: Michael Foster [email protected],
Mark Harper [email protected],
Sylvia Heal [email protected],
Julie Kirkbride [email protected],
Peter Luff [email protected],
Jacqui Smith [email protected],
Michael Spicer [email protected],
Dr Richard Taylor [email protected],
Lynda Waltho [email protected],
Bill Wiggin [email protected]
CC: Countess of Mar [email protected],
Liz Lynne MEP [email protected]


Just to let you know, the following message was received via IMEGA-E:

APPG on M.E.
www.afme.org.uk

The next meeting of the All Party Parliamentary Group on M.E. will
take place in Committee Room 17, House of Commons, at 4pm on Tuesday
22 January.

Unfortunately the Secretary of State for Health was unable to attend
on any of the dates suggested but Ann Keen MP, Parliamentary Under
Secretary of State for Health Services, has agreed to speak to the
Group.

Details are being finalised and an agenda will be circulated in due
course.

Mrs Keen is well aware of M.E. issues, both as a former nurse and as
constituency MP for members of Network MESH (West London).

Best wishes to all for Christmas and the New Year
and thank you for your support during 2007

Jill Pigott 
Patient/Carer Representative 
Worcestershire M.E. Support Group
(www.geocities.com/worcsmegroup/)
(01905 455187)

--- In [email protected], "Colin Barton" <colin.sussexme@...>
wrote:

APPG on M.E.
www.afme.org.uk

The next meeting of the All Party Parliamentary Group on M.E. will
take place in Committee Room 17, House of Commons, at 4pm on Tuesday
22 January.


Unfortunately the Secretary of State for Health was unable to attend
on any of the dates suggested but Ann Keen MP, Parliamentary Under
Secretary of State for Health Services, has agreed to speak to the
Group.

Details are being finalised and an agenda will be circulated in due
course.

Mrs Keen is well aware of M.E. issues, both as a former nurse and as
constituency MP for members of Network MESH (West London).




[Non-text portions of this message have been removed]

--- End forwarded message ---

--- In [email protected], "Jill Pigott" <worcsmegroup@...>
wrote:

I wrote to all MPs who represent members of the Worcestershire
Support Group - by that I mean that some of our members at out of
the county.

And - message from Peter Luff, MP for Mid Worcestershire:

Don't worry! We can go on and on requesting debates every time the
health department is in the rota; there is  no time limit.  I can
only apply in those weeks when I know I'm free at the times of the
debates, but I will do so.  Lots of people apply, so it's a real
lottery, quite literally. One of us will get it eventually.

Jill



--- In [email protected], "Charles Shepherd"
<charles.c.shepherd@> wrote:
>
> MAY BE REPOSTED
>
> We have just been informed that John Bercow MP has not been
successful in the parliamentary ballot to try and secure a House of
Commons adjournment debate on ME in the week beginning November 19th.
>
> However, this does not prevent MPs making further attempts at
securing a debate in the next weekly ballot.
>
> Consequently, we would urge anyone who has not yet done so to
write to their MP about this matter using the two page letter that
is contained in the October issue of ME Essential magazine.
>
> This letter can also be downloaded ('Send a letter to your MP')
from the MEA website: http://www.meassociation.org.uk
>
> Dr Charles Shepherd
> Trustee, ME Association
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

--- End forwarded message ---

--- In [email protected], "Colin Barton" <colin.sussexme@...>
wrote:


Perception versus polysomnographic assessment of sleep in CFS and
non-fatigued control subjects: results from a population-based study.

Journal: BMC Neurol. 2007 Dec 5;7(1):40 [Epub ahead of print]

Authors: Majer M [1,2], Jones JF [2], Unger ER [2], Solomon
Youngblood L [2], Decker MJ [3], Gurbaxani B [2], Heim C [1], Reeves
WC. [2]

Affiliations:
[1] Department of Psychiatry and Behavioral Sciences, Emory
University School of Medicine, Atlanta, USA
[2] Chronic Viral Diseases Branch, Centers for Disease Control &
Prevention, Atlanta, USA,
[3] Fusion Sleep, Suwanee, USA

NLM Citation: PMID: 18053240


ABSTRACT:
BACKGROUND: Complaints of unrefreshing sleep are a prominent
component of chronic fatigue syndrome (CFS); yet, polysomnographic
studies have not consistently documented sleep abnormalities in CFS
patients. We conducted this study to determine whether alterations in
objective sleep characteristics are associated with subjective
measures of poor sleep quality in persons with CFS.

METHODS: We examined the relationship between perceived sleep quality
and polysomnographic measures of nighttime and daytime sleep in 35
people with CFS and 40 non-fatigued control subjects, identified from
the general population of Wichita, Kansas and defined by empiric
criteria. Perceived sleep quality and daytime sleepiness were
assessed using clinical sleep questionnaires. Objective sleep
characteristics were assessed by nocturnal polysomnography and
daytime multiple sleep latency testing.

RESULTS: Participants with CFS reported unrefreshing sleep and
problems sleeping during the preceding month significantly more often
than did non-fatigued controls. Participants with CFS also rated
their quality of sleep during the overnight sleep study as
significantly worse than did control subjects. Control subjects
reported significantly longer sleep onset latency than latency to
fall asleep as measured by PSG and MSLT. There were no significant
differences in sleep pathology or architecture between subjects with
CFS and control subjects.

CONCLUSION: People with CFS reported sleep problems significantly
more often than control subjects. Yet, when measured these parameters
and sleep architecture did not differ between the two subject groups.
A unique finding requiring further study is that control, but not CFS
subjects, significantly over reported sleep latency suggesting CFS
subjects may have an increased appreciation of sleep behaviour that
may contribute to their perceived sleep problems.


[Note: This is an Open Access article.  The full text is
available for free in PDF at
http://www.biomedcentral.com/content/pdf/1471-2377-7-40.pdf ]

--- End forwarded message ---

--- In [email protected], "Colin Barton" <colin.sussexme@...>
wrote:


Sleep Quality Perception in the Chronic Fatigue Syndrome:
Correlations with Sleep Efficiency, Affective Symptoms and Intensity
of Fatigue.

Available in PDF at
http://www.cfids-cab.org/rc/Neu.pdf

Journal: Neuropsychobiology. 2007 Nov 6;56(1):40-46 [Epub ahead of
print]

Authors: Neu D, Mairesse O, Hoffmann G, Dris A, Lambrecht LJ,
Linkowski P, Verbanck P, Le Bon O.

Affiliation: Sleep Laboratory, University Hospital Brugmann,
Université Libre de Bruxelles, Brussels, Belgium.

NLM Citation: PMID: 17986836


Background/Aims: One of the core symptoms of the chronic fatigue
syndrome (CFS) is unrefreshing sleep and a subjective sensation of
poor sleep quality. Whether this perception can be expressed, in a
standardized questionnaire as the Pittsburgh Sleep Quality Index
(PSQI), has to our knowledge never been documented in CFS.
Furthermore, correlations of subjective fatigue, PSQI, affective
symptoms and objective parameters such as sleep efficiency are poorly
described in the literature.

Methods: Using a cross-sectional paradigm, we studied subjective
measures like PSQI, Fatigue Severity Scale scores and intensity of
affective symptoms rated by the Hamilton Depression and Anxiety
scales as well as objective sleep quality parameters measured by
polysomnography of 28 'pure' (no primary sleep and no psychiatric
disorders) CFS patients compared to age- and gender-matched healthy
controls.

Results: The PSQI showed significantly poorer subjective sleep
quality in CFS patients than in healthy controls. In contrast,
objective sleep quality parameters, like the Sleep Efficiency Index
(SEI) or the amount of slow-wave sleep did not differ significantly.
Subjective sleep quality showed a correlation trend with severity of
fatigue and was not correlated with the intensity of affective
symptoms in CFS.

Conclusion: Our findings indicate that a sleep quality misperception
exists in CFS or that potential nocturnal neurophysiological
disturbances involved in the nonrecovering sensation in CFS are not
expressed by sleep variables such as the SEI or sleep stage
distributions and proportions.

Copyright (c) 2007 S. Karger AG, Basel.

--- End forwarded message ---