Familyfights4me

ME Fundraiser May 19th

2012-01-24T11:14:00.000-08:00

Ok Guys, We have now secured " DONNA FLEMING" - As DOLLY for our ME Fundraiser a show not to be missed. Ticket price to be confirmed, more details to follow. Watch this space !

Two programmes on M.E. – BBC Alba (Scotland), January 23 and 30 (with Gaelic translations). www.meassociation.org.uk

2012-01-16T10:39:00.001-08:00

http://www.meassociation.org.uk/?p=10017

Belfast Marathon on May 7th

2012-01-12T13:10:00.000-08:00

FamilyFights4me are now recruiting for the Belfast Marathon on May 7th in aid of ME Research. Anyone interested in taking part in the relay team or the Marathon walk of either 9 miles and 26.2 miles, please get in touch now. Start adding names :)

Belfast ME SUPPORT GROUP

2012-01-10T12:31:00.000-08:00

Belfast ME Support Group Meeting
Tuesday 7th February 2012
7-8pm
The Emerald Roadhouse
Finaghy Road North, Belfast
New Members welcome
Contact Antoinette Christie / Jeanette Marley

Your rights to choice in the NHS

2012-01-10T08:11:00.001-08:00

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Yourrightstochoice.aspx

The ME/CFS Observer

2012-01-09T08:44:00.000-08:00

http://paper.li/SandmanTweets/1294149563?utm_source=subscription&utm_medium=email&utm_campaign=paper_sub

Diary of a Benefit Scrounger

2012-01-09T08:06:00.001-08:00

http://diaryofabenefitscrounger.blogspot.com/2012/01/i-support-spartacus-report.html

International ME/CFS Conference 2012

2012-01-06T09:01:00.001-08:00

http://www.investinme.org/IiME%202012%20International%20ME%20Conference%20Home.htm

BREAKING NEWS....

2012-01-02T13:03:00.001-08:00

BREAKING NEWS....HSCB HAVE JUST INFORMED US THEY HAVE KEPT THEIR PROMISE OF AN M.E. WORKSHOP IN MARCH!!!! THIS IS A DIRECT RESULT OF OUR MEETING WITH THEM IN BELFAST LAST MONTH. WELL DONE TO FAMILY FIGHTS 4 M.E./NEWRY & MOURNE ME/FMS SUPPORT GROUP/ARMAGH&PORTADOWN M.E. SUPPORT GROUPS/MID ULSTER M.E. SUPPORT GROUP. GREAT PROGRESS FOR NORTHERN IRELAND AND A GREAT EXAMPLE OF GROUPS WORKING TOGETHER FOR NHS SERVICES HERE.

I fought off ME

2011-12-29T12:44:00.001-08:00

http://www.thisislondon.co.uk/theatre/article-23920911-michael-crawford-i-fought-off-me-to-make-wizard-comeback-to-the-west-end.do#.Tvw7EUXsc9c.facebook

Belfast ME Support Group Meeting

2011-12-29T12:40:00.000-08:00

Belfast ME Support Group Meeting
Tuesday 3rd January 2012
7-8pm
The Emerald Roadhouse
Finaghy Road North, Belfast
New Members welcome
Contact Antoinette Christie / Jeanette Marley

BREAKING NEWS

2011-12-01T07:47:00.000-08:00

Dr William Weir has just informed us that he will be attending our ME SUPPORT GROUP on Tuesday 6th December.
Dr Weir works part-time as a Consultant Physician in the NHS but he also runs a private ME/CFS Clinic at 10, Harley Street, London.

Belfast ME SUPPORT GROUP

2011-12-01T07:44:00.000-08:00

On Tuesday 6/12/11, Stuart Drennan will be attending our group and would like to talk to as many people as possible with regards to what it actually feels like to live with ME - he is currently working on a script for a short film with regards to ME. Stuart is a local writer and film maker, who is also a close family friend. There is no obligation for anyone to speak to him, but he would really appreciate your feedback as he is concerned that without speaking to actual sufferers he will not get a true picture of the emotional impact of this illness on individuals.

Stuart has worked on several TV series including Seacht, Maru, In Cold Blood, as well as a short films "Annalogue Love", and "Infliction".

We would be very grateful if as many people as possible could take some time to talk to Stuart about their experiences.

ME support group

2011-07-11T04:30:00.001-07:00

Familyfights4me will be holding their first ME support group meeting on Tuesday August 2nd at 7pm in the Emerald Roadhouse, Finaghy Road North, Belfast

http://www.theemeraldroadhouse.com/

Any ME Sufferers wishing to attend please contact me to book a place

WPI: An Introduction

2011-07-10T07:56:00.000-07:00

Message from Event Organiser re Judy Mikovits Talk in Belfast

2011-07-10T07:45:00.000-07:00

It was a great honour for us all to meet Dr. Judy Mikovits in Belfast. Her quiet determination was clear for all to see and also her committment to helping patients all over the world.

She had time and patience to answer any questions we put to her and she left us with the greatest gift of all....HOPE for a better future.

Whatever the eventual outcome of the xmrv story, there will be no going back from the progress that has been made since this discovery in 2009.

The May conference has put N.Ireland on the M.E. map and this is just the beginning!! Watch this space!

I feel I am so blessed to have good friends like Antoinette and Jeanette, thank you both for all your hard work and help with everything I do.

Joan McParland

Money Raised in the Belfast City Marathon

2011-07-02T08:47:00.001-07:00

In aid of ME Research UK

Judy Mikovits, Whittemore Peterson Institute - Belfast 22 May 2011

2011-06-28T11:42:00.000-07:00

Judy Mikovits talk was organised by Joan McParland and the Newry and Mourne Support group

2011-06-28T11:34:00.000-07:00

Professor Malcolm Hooper’s further concerns about the PACE Trial article published in The Lancet

2011-06-28T06:27:00.001-07:00

http://www.meactionuk.org.uk/Normal-fatigue.htm

2011-06-12T12:06:00.000-07:00

Chronic Fatigue syndrome-misnamed-misdiagnosed-misunderstood

2011-06-12T11:46:00.000-07:00

http://www.whchronicle.com/2011/06/chronic-fatigue-syndrome-misnamed-misdiagnosed-misunderstood/

Voices from the Shadows

2011-06-06T07:45:00.001-07:00

http://www.facebook.com/#!/VoicesfromtheShadows

Belfast Marathon

2011-06-06T07:43:00.001-07:00

I would like to say thank you to all who sponsored familyfights4me on doing the Belfast Marathon, a grand total of £1091.00 is the total so far for ME Research uk.

The 6th Invest in ME International ME/CFS Conference 2011

2011-06-06T07:42:00.000-07:00

http://www.investinme.org/IiME%20Conference%202011/IiME%20International%20ME%20Conference%202011%20Conference%20Report.htm

Voices from the Shadows Trailer

2011-06-06T07:41:00.000-07:00

http://vimeo.com/24683179

Professor Malcolm Hooper’s Detailed Response to Professor Peter White’s letter to Dr Richard Horton about his complaint re: the PACE Trial articles pu

2011-05-31T08:27:00.001-07:00

http://www.meactionuk.org.uk/Comments-on-PDW-letter-re-PACE.htm

Virologist Dr Antoinette C. van der Kuyl: Evidence strongly suggests that XMRV is truly infecting and replicating in humans

2011-05-31T08:23:00.001-07:00

http://niceguidelines.blogspot.com/2011/05/virologist-dr-antoinette-c-van-der-kuyl.html

Researchers stand by findings linking XMRV to chronic fatigue syndrome

2011-05-31T08:20:00.001-07:00

http://www.latimes.com/health/boostershots/la-heb-xmrv-chronic-fatigue-20110510,0,1125656.story

Follow us on Facebook

2011-05-25T05:53:00.000-07:00

http://www.facebook.com/home.php#!/profile.php?id=100000620851967

"Arnie's Story": A Child's CFS, Misdiagnosed as Munchausen's by Proxy

2011-05-25T05:50:00.000-07:00

http://www.prohealth.com/me-cfs/library/showArticle.cfm?libid=16108&B1=EM042711C&utm_source=EM042711C&utm_medium=em&utm_campaign=MECFS&slvor=10628.1037965.0.1.0.37117&eid=fighting_fatigue%40hotmail.com

Please keep voting

2011-05-25T05:49:00.000-07:00

http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-for-neuro-immune-disease?src=vote_share

David Bell

2011-05-25T05:48:00.000-07:00

http://www.davidsbell.com/LynNewsV8N1.html

Stop Victimising The Disabled, Leave Their Benefits Alone

2011-05-25T05:43:00.001-07:00

http://www.causes.com/causes/563229

Jane Colby of The Young ME Sufferers Trust

2011-05-25T05:39:00.000-07:00

You can now follow Jane Colby of The Young ME Sufferers Trust on Twitter @JaneCColby

HERE WE GO :)

2011-05-25T05:38:00.001-07:00

Here we go

https://www.justgiving.com/account/your-pages/Antoinette-Christie0

Neglected

2011-05-25T05:35:00.000-07:00

Hi all have been neglecting my blog abit and feeling pretty guilty :(

Now I'm back watch this space :)

ROBBIE WILLIAMS BUG HELL

2010-09-19T06:07:00.000-07:00

http://www.dailystar.co.uk/news/view/154361/Robbie-Williams-bug-hell/

Robbie Williams fighting mystery illness

2010-09-19T06:05:00.003-07:00

http://www.dnaindia.com/entertainment/report_robbie-williams-fighting-mystery-illness_1439774

I've been confined to my room for 14 years, says ME sufferer Amy

2010-09-15T05:37:00.001-07:00

http://www.thisisleicestershire.co.uk/news/ve-confined-room-14-years/article-2644795-detail/article.html

Local family feels vindicated by breakthrough research

2010-09-15T05:31:00.001-07:00

http://www.mountainx.com/news/2010/091510local-family-feels-vindicated-by-breakthrough-research

Evidence of cardiovascular problems in ME/CFS that NICE disregarded

2010-09-09T07:37:00.000-07:00

http://www.meactionuk.org.uk/Cardiovascular.htm

Chronic fatigue syndrome 'genuine illness'

2010-09-09T07:16:00.001-07:00

http://news.bbc.co.uk/today/hi/today/newsid_8975000/8975412.stm

Scientists claim ME illness is NOT 'all in the mind' Read more: http://www.dailymail.co.uk/health/article-1309839/Scientists-claim-ME-illness-NOT-min

2010-09-09T07:15:00.001-07:00

http://www.dailymail.co.uk/health/article-1309839/Scientists-claim-ME-illness-NOT-mind.html

The CDC vs CFS/ME...Or, How NOT To Find A Retrovirus

2010-09-09T07:14:00.001-07:00

http://www.youtube.com/watch?v=M6QHLMi_mgY

Scientist gets corrected on the limitations of using PCR in XMRV

2010-09-09T07:13:00.000-07:00

http://www.youtube.com/watch?v=G4yl_UgbrrI

Bulletin of IACFSME 2010

2010-09-09T07:04:00.000-07:00

http://www.iacfsme.org/BULLETINSUMMER2010/Summer2010SampsonAnalysisCohortTrial4481/tabid/435/Default.aspx

ME Breakthrough

2010-09-09T07:02:00.001-07:00

http://www.itv.com/central-west/me-breakthrough69763/

New research sheds light on ME

2010-09-09T07:01:00.001-07:00

http://www.activequote.com/health-insurance/news/New-research-sheds-light-on-ME.aspx

Chronic fatigue syndrome may be caused by virus, Scottish researchers find

2010-09-09T07:00:00.001-07:00

http://www.dailyrecord.co.uk/news/health-news/2010/09/08/chronic-fatigue-syndrome-may-be-caused-by-virus-scottish-researchers-find-86908-22545645/

Lets raise awareness & get ME on TV

2010-09-09T06:58:00.000-07:00

http://www.facebook.com/home.php?#!/group.php?gid=397706469637&ref=mf

Study links ME to virus

2010-09-09T06:57:00.000-07:00

http://www.webmd.boots.com/news/20100906/study-links-me-to-virus?src=RSS_PUBLIC

2010-09-09T06:56:00.002-07:00

Scroll to 2mins 3secs

http://www.bbc.co.uk/iplayer/episode/p009qvq2/Annie_Othen_07_09_2010/

Chronic fatigue syndrome may be caused by virus, Scottish researchers find

2010-09-09T06:56:00.001-07:00

http://www.dailyrecord.co.uk/news/health-news/2010/09/08/chronic-fatigue-syndrome-may-be-caused-by-virus-scottish-researchers-find-86908-22545645/

2010-09-09T06:55:00.001-07:00

http://www.meactionuk.org.uk/So-near-yet-so-far.htm

2010-09-09T06:54:00.002-07:00

http://www.youtube.com/watch?v=JtsZH7pn-Co

2010-09-09T06:54:00.001-07:00

http://www.nursingtimes.net/whats-new-in-nursing/primary-care/chronic-fatigue-syndrome-linked-to-virus/5019075.article

Sophia Mirza before ME

2010-09-09T06:53:00.000-07:00

http://www.youtube.com/watch?v=7zQuyue1DTA&feature=related

Belfast Marathon

2010-06-06T12:49:00.001-07:00

A massive Total of £1607.00 has been raised for ME Research by family and friends who took part and raised much needed funds in the Belfast Marathon.

Many Thanks to all who ran the marathon and to everyone who donated, your generosity will make a difference to all who are suffering from this awful debilitaing illness.

My Facebook Link

2010-05-27T08:32:00.001-07:00

http://www.facebook.com/people/Antoinette-Christie/1013288978#!/group.php?gid=300490079720&ref=m

Children with CFS/ME

2010-05-27T08:30:00.000-07:00

http://www.facebook.com/people/Antoinette-Christie/1013288978#!/group.php?gid=300490079720&ref=m

Order your 2010 Conference DVD now.

2010-05-27T08:29:00.000-07:00

http://www.investinme.org/IiME%20International%20ME%20Conference%202010%20-%20DVD%20Orders%20PreProduction.htm

Investinme

2010-05-27T08:28:00.001-07:00

http://www.investinme.org/ResearchCurrentProjects.htm#WPI

Vitamin D

2010-05-27T08:27:00.001-07:00

http://www.prohealth.com/library/showarticle.cfm?libid=15369

Interview with Lorraine Kelly and Kay Gilderdale on GMTV this was supposed to be shown on ME Awareness day

2010-05-27T08:26:00.001-07:00

http://www.gm.tv/videos/?vxClipId=1441_gmtv_9165

London Conference 2010

2010-05-27T08:24:00.000-07:00

http://cfspatientadvocate.blogspot.com/2010/05/london-conference-may-24-2010.html

Please feel free to make a donation no matter how small

2010-01-25T04:13:00.000-08:00

http://www.justgiving.com/Antoinette-Christie/

Cure 4 ME

2010-01-15T12:04:00.000-08:00

Cure 4 ME Bulletin
Thank you for reading!
Help the cause:
I Read This

FOR IMMEDIATE RELEASE
Frankie Vigil
R&R Partners for
Whittemore Peterson Institute
775-336-4555 775-336-4555
frankie.vigil@rrpartners.com

Whittemore Peterson Institute Announces Availability of Updated XMRV Testing
Reno, Nev. - In October 2009, together with the Cleveland Clinic and National Cancer Institute,
the Whittemore Peterson Institute published findings in Science regarding the discovery of
XMRV in the blood of Chronic Fatigue Syndrome (CFS) patients. The testing method, validated
in multiple other labs using positive control samples, uses a unique process that was extensively
peer reviewed before publication and provides the most accurate results available.
This virus culture test is the same method used in the Science publication, and the only
scientifically validated methodology to find XMRV. Some labs, including the recent study
published in the U.K., have used non-validated PCR and whole blood PCR assays. At this time
no single PCR or whole blood assay alone has been validated as accurately detecting XMRV,
and is therefore not an appropriate way to study or diagnose the presence of the virus.
WPI has licensed the latest version of the test to Viral Immune Pathways Diagnostic
Laboratories (VIP Dx) in Reno, Nev. The non-exclusive license allows patients and their doctors
access to a reliable diagnostic tool. The newly refined test uses a virus culture methodology that
yields more reliable results in one test at a lower cost to patients.
“Our mission at WPI is to discover bio markers of disease and translate those discoveries into
accurate diagnostics and effective treatments for patients,” said WPI Founder and President
Annette Whittemore. “We continue to talk to other clinical laboratory companies, both nationally
and internationally, in order to make the test available to a wider audience.”
WPI Research Scientist and co-author of the Science paper, Dr. Vincent Lombardi, is providing
technical assistance and oversight of the VIP Dx testing. In exchange for the non-exclusive
license, VIP Dx will pay a royalty to WPI for each test it conducts.
Continued
“We structured the licensing contract to be sure that any and all profits that might emerge at VIP
Dx from XMRV testing come directly back to WPI to benefit the research program” said
Whittemore.
Dr. Lombardi is an employee of WPI, and has no personal financial interest in VIP Dx.
Likewise, the Whittemore family put their interest in VIP Dx into a trust to benefit WPI.
The availability of these tests has a dramatic impact to the CFS/ME community. These tests
allow licensed laboratories to begin answering important questions about XMRV’s incidence in
disease and prevalence in the world. WPI hopes that this will generate further research related to
XMRV. "The institutes’ driving goal continues to be the translation of research to meaningful
results for patients, explained Whittemore.
It is still unknown exactly how XMRV impacts humans. Scientists who understand the potential
ramifications of human infection with retroviruses take the study of XMRV seriously. WPI
researchers along with many other scientists around the world are actively engaged in advancing
research in this field.
Whittemore Peterson Institute
The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge,
and effective treatments to patients with illnesses that are caused by acquired dysregulation of the
immune system and the nervous system, often results in lifelong disease and disability. The WPI is
the first institute in the world dedicated to X associated neuro-immune disease (XAND), and other X
associated diseases, integrating patient treatment, basic and clinical research and medical
education.

The 25% ME Group is pleased to report the appointment of their new Patron and Medical Advisor.

2009-11-10T08:45:00.000-08:00

PERMISSION TO REPOST

The 25% ME Group is pleased to report the appointment of their new Patron
and Medical Advisor.

We are absolutely delighted to announce that Dr Byron Hyde will be taking up
the role with immediate effect.

Dr Byron Hyde is leading physician and researcher specialising in Myalgic
Encephalomyelitis (ME) and has worked exclusively with ME patients since
1985.

He is the founder and chairman of the Nightingale Research Foundation which
is dedicated to explore, understand and treat patients disabled with ME and
is at the forefront of the struggle to draw a clear distinction between ME
and the current definitions of Chronic Fatigue Syndrome. In 1992 he
published the medical reference book still used by researchers
internationally "The Clinical and Scientific Basis of Myalgic
Encephalomyelitis and Chronic Fatigue Syndrome".

Dr Byron Hyde is an outspoken critic of the role psychiatry has played in
ME. His entreaty that "Psychiatrists should not ever be placed in charge of
diagnosis and treatment of M.E. patients" is one we fully support.

Dr Byron Hyde has been instrumental in bringing about recognition of ME as a
serious illness and we feel he fully represents the interests and aims of
the 25% ME Group. We are proud to have him as our Patron.

We also take great pleasure in announcing our new additional Medical
Advisor, Dr Nigel Speight, who, as you will read below, recently departed
from AYME. We are extremely pleased to have Dr Speight on board as he is a
highly respected medical professional within the ME field and a great
advocate for the biomedical view of ME.

Below we have posted resignation letter from Dr Nigel Speight to AYME (Young
Childrens' ME Charity) for your information.

"Dear all

I just thought I should inform you officially that after a long and happy
association with AYME I have decided to resign as their Patron. Without
going into too much detail I would say that over the last couple of years I
have become aware that they have changed their position on several areas and
that our views have accordingly

diverged.

In particular AYME seem to have become more willing to collaborate with the
medical and psychiatric establishment in order to appear respectable. This
appears to have been the cause of AYME's relative enthusiasm for the NICE
Guidelines, which most of us feel involve an overemphasis on CBT and GET.
This compromise seems to have helped the

psychiatrists to get a new lease of life.

The result of all this is that AYME appear to have alienated themselves
from most of the other ME charities (with the exception of AfME who appear
to be taking a similar position). In this controversy I feel more in
sympathy with the rest of you.

I have gained the impression that AYME no longer appreciate my opinions and
prefer my status as their figurehead to be a largely

silent one.

It is a combination of all these factors that has caused me to resign and I
am sure you will all understand.

With Best Wishes

Nigel Speight"

We are especially delighted to announce the new Patron and Medical Advisor
for our Group because as many of you will know, both stand for the true
recognition and research of ME (as opposed to including it along with other
Chronic Fatigue conditions). They also are firmly opposed to any
psychological intervention within the area of ME.

We hope you will be delighted along with us regarding this news and please
feel free to report or republish this information within your own
publications etc.

With best wishes

Simon Lawrence

Chairperson

25% ME GROUP

21 Church Street

Troon

Ayrshire

KA10 6SQ

enquiry@25megroup. org

www.25megroup. org

Belfast Working Group: “Basket Weaving & Soft Toys”.

2009-11-10T08:27:00.000-08:00

> Please post widely.
>
> Subject: Belfast Working Group: “Basket Weaving & Soft Toys”.
>
> Belfast Working Group: “Basket Weaving & Soft Toys”.
>
> After decades of near-paralysis in the care of ME patients in Ulster, the DHSSPS has moved with lightning speed to set up a new Northern Ireland Working Group for ME. This left patient groups scrambling to nominate representatives in a short space of time. It was not easy to secure nominees, particularly from the counties. Even travelling to Belfast, never mind surviving a long meeting, is an impossible challenge for most patients. The resultant spread of patient representation is therefore not perfect, and inevitably there will be complaints. Counties Armagh and Fermanagh for example, are not represented. But patient groups did the best they could in the time available, and they have managed to field a robust team on the Working Group.
>
> NIMEA have secured representation from counties Derry, Tyrone, Antrim and Down. So that no single county representative is overloaded, attendance at meetings will be rotated. Jo Calder from NIMEA is purring with satisfaction that the Working Group is up and running at last. After years of patient lobbying at Stormont, she has finally got the politicians to listen. In concert with all other patient representatives present, she delivered an uncompromising message to the Working Group - No GET. No CBT. No psychiatric management.
>
> Derek Peters from the NI Campaign for ME/CFS Healthcare has close links with MERUK, the research group run by Neil Abbot and Vance Spence in Dundee. Derek gave a substantial presentation to the Working Group, emphasising that ME patients wanted effective treatments to address what is a physical disease, and that adequate investment in research would be the only way to find a cure. Derek was accompanied by Joan Robinson, who read some compelling patient histories. The NHS was not making adequate provision, she said, and one result was that too many ME patients were being fleeced by charlatans in the “complementary” sector. Antoinette Christie and her sister Jeanette Marley (familyfights4me) are very experienced advocates, and well qualified to speak on behalf of the severely affected, children, adolescents, and their families.
>
> The final part of the Working Group meeting on 28th October focussed on the future of the CFS Clinic at Belfast City Hospital. NIMEA received mixed reports about this clinic before it was effectively closed in July 2009. There had been consistent complaints. But there were no gripes about the Senior Occupational Therapist who did most of the clinic’s work. On the contrary, she was well-liked by her ME patients. On 12th October the Minister told the Assembly that the Belfast Clinic had only accepted 16 patients during 2009. He said that Jayne Perkes the Senior OT was continuing to treat the existing intake. He conceded that the figure of 16 clients was not a fair reflection of demand as identified by patient groups.
>
> There is a range of possible explanations for this low number. It represented the intake for 6 months or less; only Belfast patients were eligible for referral; not all referrals were accepted or judged suitable for management; and many patients refused to be referred to a service headed by a psychiatrist, located in a psychiatric unit.
>
> At the Working Group Horace Reid insisted that the future of the Senior Occupational Therapist in post be determined there and then. “When this Group goes looking for staff to man the new ME clinics, you will discover that there aren’t any. If you delay for six months, you will find that Jayne Perkes the Senior OT will have been diverted into another specialty, and all the skills she has built up over the years will have gone to waste. If you allow that situation to develop, you will be starting from zero level with the new clinics. Jayne is the obvious foundation stone upon which a new service will be built.”
>
> “While Dr. Scott was the gatekeeper for the Belfast CFS clinic, it was the Senior OT who was responsible for most of the patient management. She is still in post, she is still funded, and there are plenty of patients who need to see her. No new patients have been referred since July ’09, and a backlog is building up. Surely some mechanism can be devised for her to receive GP referrals. After all according to NICE, GPs are supposed to be capable of diagnosing ME”. (Antoinette interjected here, expressing well-founded doubts that they could).
>
> Line managers from the Belfast Trust were present at the Working Group meeting. They readily gave assurances that the Senior OT would remain in post, and her skills would be preserved. Reintroducing referrals from GPs would need to be done carefully – when patients from all over Ulster became eligible, there would be a danger that Jayne would be overwhelmed. “I’d be quite pleased if she were overwhelmed”, said Horace. “That might prompt you to employ more staff.”
>
> There was then a short debate on the merits of occupational therapy versus physiotherapy. Derek Peters is no fan of OTs: “Basket weaving and soft toys”, he snorted dismissively. Joan Calder was adamant that any new ME clinic should not be headed by a physiotherapist; inevitably that would provide a route to introduce Graded Exercise Therapy by the back door.
>
> An OT Manager was present, and defended her specialty: “Actually we undertake quite challenging projects, such as Condition Management Programmes for the DWP” said she, brightly. (Most ME patients are now being refused the higher rate of ESA by the DWP. Not sure it is helpful for OTs to associate themselves with this draconian new regime).
>
> Antoinette said she had negative experiences with OTs in the Community. Horace confirmed that a number of mothers had made similar complaints to NIMEA. (One Senior OT had refused to recommend a stair lift for one severely affected teen. The girl was then reduced to crawling upstairs on hands and knees).
> Horace referred to official guidance such as paragraph 1.4.4.1 in the NICE CFS/ME guidelines, (p.42). “For people with moderate or severe CFS/ME, providing or recommending equipment and adaptations (such as a wheelchair, blue badge or stairlift) should be considered as part of an overall management plan, taking into account the risks and benefits for the individual patient. This may help them to maintain their independence and improve their quality of life.”
>
> Horace asked: “There are regular complaints that OTs in the Community are not providing these aids. Could it be that individual OTs regard ME patients as malingerers? Could it be that personal prejudice is blinding them to official guidance?”
>
> The Chairman David Galloway asked whether NIMEA’s endorsement of Jayne Perkes implied an endorsement of Occupational Therapy? Horace said it was an endorsement of an individual who was trusted by her patients; it didn’t imply approval of any particular NHS specialty.
>
> Mr. Galloway repeated that he envisaged Jayne playing a lead role in the proposed new service; for instance she would certainly be involved in the training of new members of NHS staff. There are an estimated 6700 ME patients in Northern Ireland, and much of the responsibility for them will now devolve on one single part-time NHS employee. Jayne Perkes has been carrying that kind of load for some years, and luckily has survived so far. Let us hope she can continue to.
>
> H.
>

Belfast Working Group: A Shoestring Affair.

2009-11-01T07:39:00.001-08:00

Please circulate.

Belfast Working Group: A Shoestring Affair.

“The Minister and his civil servants are resorting to the art of illusion, and are desperately trying to conjure imaginary ME services out of thin air.”

First Meeting of the Northern Ireland Working Group on ME, 28th October 2009.

The Northern Ireland ME Working Group is going to be a shoestring affair. It will not be the Belfast equivalent of the English CMO’s Working Group in 2002, and it will not be comparable to ongoing efforts in Scotland to produce a Statement of Best Practice.

The Working Group Chairman (David Galloway, Director of Secondary Services DHSSPSNI) opened proceedings by announcing that the primary intention was to set up pathways to guide ME patients to existing services in Northern Ireland. This drew a tart response from Horace Reid, who said that currently there were NO specialist services for ME patients in Ulster, and than any new pathways will simply lead to blind alleys. The Chairman seemed to accept this point.

In his statement to the Northern Ireland Assembly on Monday 12 October 2009, the Health Minister tossed a number of mutually incompatible proposals into the air, and we are now waiting to see where they land. Among the phrases he used were: “We are guided by the NICE guidelines.” “We are looking at best practice in other areas.” “In common with NICE guidelines, a neurology-based service rather than a psychology-based service.” “We will take account of the neurology review, which is coming forward, and the physical and sensory disability strategy, the consultation on which will be put out shortly.” “No doubt we can tease out whether to have one ME centre in Northern Ireland or use the services that are available throughout the health and social care framework to create a system in Northern Ireland that is signposted by GPs.”

Take out of that what you may.

The NICE CFS/ME guidelines of 2007 became operative in Ulster in February 2008. The NI CMO instructed the health trusts to implement them, and invited their proposals. A deafening silence ensued, and absolutely nothing has happened since. Except that in July 2009 the Belfast Trust closed the only existing specialist ME facility that we had in Northern Ireland.

The Health Minister is embarrassed that 7000 ME patients are being largely neglected by his Department, and tells fibs in the Assembly to disguise this failure: “Mr McCarthy says that ME patients have nowhere to go. That is not true. Patients have the whole health and social care system to address their needs, and it does so.” ME patients here know this is pure fiction.

With recession, severe budget cuts are now affecting the NHS in Ulster. In September for instance, 150 acute beds in the two main Belfast teaching hospitals came under threat. It would initially cost £0.7m if the DHSSPS thought of implementing the NICE CFS/ME guidelines in Ulster, and that kind of money will be hard to find. So the Minister and his civil servants are resorting to the art of illusion, and are desperately trying to conjure imaginary ME services out of thin air.

At the Working Group’s first meeting Horace got to the point pretty quickly: “The needs of ME patients have been identified long ago by committees in Canada, Australia, England and Scotland. There is no need to re-invent the ME wheel in Belfast, with prolonged deliberations. The proceedings of this NI Working Group should be time-limited. The important thing is implementation. The only thing that will impress our patients will be results on the ground. We have a very large number of patients who are being neglected, we have no budget, and I could count on the fingers of one hand the number of NHS staff in Ulster who know anything about the management of ME. These are the unpalatable realities, and the challenges for this Working Group”.

A wide range of clinical disciplines were represented at the meeting by senior NHS personnel, and Antoinette Christie and her sister Jeanette left them in no doubt of the consequences of government failure to invest in the diagnosis and management of ME. She and Jeanette are seasoned advocates, and they are a formidable double act. Antoinette has two teens with ME, one of them very severely affected. As a mother she is carrying a load which would destroy most families, but she remains amazingly full of fight.

NIMEA knows of many other mothers in the same situation, who dread ham-fisted intervention by the NHS and Social Services, and who have leaned it is safer to keep your head down and not attract attention. But not Antoinette. She knows the NHS is failing her, and she actively carries the war to the enemy. She and Jeanette outlined at length how it had taken fully 11 years to get a diagnosis for one of her boys. This was very powerful original testimony, coming from an ME mother right in the firing line. On Wednesday last it was a vital part of the new Working Group’s proceedings. What she had to say wasn’t news to the patients present, but it probably came as a shock to the civil servants and senior medics. I hope it did them some good.

Sooner or later Antoinette was going to become a target for the Child Protection squad, and eventually that happened when she asked for home tuition.

Horace to Antoinette: “You asked for help, and instead of helping they made trouble for you.” Antoinette: “Yes.”

Horace to Chairman: “NIMEA can tell you of other instances where ME mothers have been subjected to the same kind of ‘Blame the Victim’ tactics by DHSSPS employees.”

Towards the end of the meeting only one senior doctor contributed to the discussion with the patients. Speaking very briefly, he said that the NICE guidelines were a tool to bring about improvements for ME patients in Northern Ireland.

Seizing on this, Horace quoted from page 305 of the guidelines:
Key principles of care for people with severe CFS/ME.
“Management of severe CFS/ME is difficult and complex, and healthcare professionals should recognise that specialist expertise is needed when planning and providing care. Diagnosis, investigations, management and follow-up care for people with severe CFS/ME should be supervised or supported by a specialist in CFS/ME. People with severe CFS/ME may need to use community services at times. These services may include nursing, occupational therapy, dietetics, respite care, psychology and physiotherapy. The input of different professionals should be coordinated by a named professional.”

This was the level of service Antoinette and other ME mothers should be receiving, but instead they are left abandoned and forced to cope on their own. If the NHS in Northern Ireland intends to implement in full the NICE recommendations for severely-affected patients, then it has a mountain to climb, said Horace.

The next meeting of the Working Group will be in the New Year. By that time the different Health Trusts are expected to come up with proposals to establish new services for ME patients in Ulster.

More soon.
H

Letters from ME sufferers in N.Ireland

2009-10-12T12:10:00.000-07:00

Hi I'm looking letters from ME sufferers and their carers on life before they became ill with ME, how they are now,how they've been treated health benefits etc & what they would like to see from our NHS

Cheers

Antoinette

Xenotropic murine leukemia virus-related virus - Wikipedia, the free encyclopedia

2009-10-09T07:11:00.001-07:00

http://en.wikipedia.org/wiki/Xenotropic_murine_leukemia_virus-related_virus

Study isolates virus in chronic fatigue sufferers

2009-10-08T14:01:00.000-07:00

http://news.yahoo.com/s/nm/20091008/sc_nm/us_fatigue_virus_1

Scientists link chronic fatigue ailment to retrovirus

2009-10-08T14:00:00.000-07:00

http://www.physorg.com/news174232427.html

Retrovirus_might_be_culprit_in_chronic_fatigue_syndrome

2009-10-08T13:59:00.000-07:00

http://www.sciencenews.org/view/generic/id/48157/title/Retrovirus_might_be_culprit_in_chronic_fatigue_syndrome

Belfast Marathon 3rd May 2010

2009-10-05T10:12:00.000-07:00

Familyfights4me are recruiting volunteers for the Belfast Marathon, if interested please contact me.

All money raised will go to ME Research.

Concern at closure of ME Clinic - Ballymena Today

2009-10-01T13:40:00.001-07:00

http://www.ballymenatimes.com/news/Concern-at-closure-of-ME.5684375.jp

NI's only ME clinic closes down

2009-09-18T06:01:00.000-07:00

http://news.bbc.co.uk/1/hi/northern_ireland/8262115.stm

Save UK Disability Benefits.

2009-09-14T06:57:00.000-07:00

http://petitions.number10.gov.uk/AttendanceA/

Could Some People Diagnosed With ME/CFS Actually Have Hashimoto's Encephalopathy

2009-09-14T06:49:00.001-07:00

http://www.thyroid-info.com/hashimotos-encephalopathy.htm

A Carer's Fight for a biomedical ME service

2009-09-14T06:46:00.002-07:00

http://carersfight.blogspot.com/

John F. Kennedy's Addison's disease was probably caused by rare autoimmune disease

2009-09-14T06:46:00.001-07:00

http://www.latimes.com/news/nationworld/nation/la-sci-jfk-addisons5-2009sep05,0,3275865.story

2009-09-11T02:49:00.000-07:00

There's now a petition on the No 10 Site calling for recognition of
the vital support that Attendance Allowance (AA) and Disability Living
Allowance (DLA) provide to disabled people, and to ensure that these
benefits are secured and are not removed as part of any future reform
of the social care system in England.

You can sign the petition on the No. 10 site, at
.

How Breakspear Hospital can help with chronic fatigue and myalgic encephalomyeli

2009-09-11T02:45:00.000-07:00

http://www.breakspearmedical.com/files/chronic.html

"Please donate £4 to help us reach our target for the JustFourQuid Campaign at

2009-09-09T08:46:00.000-07:00

http://www.justgiving.com/Antoinette-Christie/

Belfast Marathon 3rd May 2010

2009-09-09T08:44:00.000-07:00

Still looking volunteers to take part in the Belfast Marathon in aid of ME Research on May 3rd 2010. U can take part in the relay or run the whole thing, up 2 u . This is a very worthwhile charity which the Government still refuse to fund.

> The Hummingbirds' Foundation for M.E.

2009-09-09T08:43:00.001-07:00

> *please repost* *please repost* *please repost* *please repost* *please
> repost*
>
> The Hummingbirds' Foundation for M.E. is setting up two new memorial
> pages.
> One for M.E. patients and one for all those patients misdiagnosed with
> 'CFS'
> who have diseases other than M.E.
>
>
> Background information:
>
> It has been known for many decades that M.E. is a neurological disease
> which
> can be fatal. Dr Elizabeth Dowsett estimates the death rate for M.E. to be
> roughly 3%. There are deaths due to cardiac failure, brain death, tumours,
> and liver failure. There are sudden deaths following
> exercise/overexerti on,
> and deaths which occur after a long period of slowly worsening illness.
> All
> kinds of deaths.
>
> Dr. Dowsett explains that although these deaths are due to M.E., they are
> disassociated from it, and are almost never recorded in statistics as
> deaths
> from M.E.
>
> Most deaths from M.E. occur without the fact ever being officially
> recorded
> or acknowledged. It is also true that only a very small number of M.E.
> deaths are given any sort of media attention. Deaths from M.E. are largely
> hidden from the public awareness, and the public continues to be told that
> M.E. is a trivial and short-term illness involving fatigue, which is also
> correctly referred to as 'CFS' and is of course never fatal.
>
> The misdiagnosis of 'CFS' can also cause death.
>
> Every diagnosis of 'CFS' is a misdiagnosis. Many hundreds of thousands of
> patients have been misdiagnosed with 'CFS' and so denied an appropriate
> diagnosis and treatment. For some of these patients, this lack of
> appropriate care can lead to death. For example, cancer patients are
> sometimes misdiagnosed with 'CFS' instead of being given the cancer
> diagnosis and treatments they need, or these treatments are given far too
> late to save the persons' life. This fact is also only very rarely
> discussed, and never in the mainstream media.
>
> The 'CFS' scam, the cover-up of the facts of M.E. and the widespread abuse
> of M.E. patients are ruining countless lives, and are also causing many
> needless deaths. It is important that the M.E. community (and the formerly
> 'CFS' misdiagnosed community) does what it can to highlight these deaths,
> in
> order to stop the same thing happening to others and so to make these
> often
> avoidable tragic deaths count for something.
>
> We would also like to pay tribute to those who have died, and to make sure
> these individuals are not forgotten. At the very least, not by us.
>
>
> The Hummingbirds' Foundation for M.E. is setting up two new memorial
> pages.
> One for M.E. patients and one for all those patients misdiagnosed with
> 'CFS'
> who have diseases other than M.E.
>
> If you are a friend or family member of someone who has died, please
> submit
> their story to us. Brief stories or detailed ones, it is up to you. Deaths
> may be very recent or have occurred long ago.
>
> If you would like a friend or family member to be included in this
> memorial
> list, please email HFME with the appropriate details. See:
> www.hfme.org/ mememoriallist. htm
>
> The memorial lists, when finalised, will be made public along with a new
> paper looking at the topic of deaths from M.E.
>
>
> Notes:
> 1. If you are reading this thinking 'what if your life has been ruined by
> a
> 'CFS' misidgnosis or by having M.E. and being mistreated and abused, but
> it
> hasn't actually killed you?' or 'What about writing about the importance
> of
> a correct early diagnosis and treatment of M.E.?' then please still submit
> your story and it can be used on the "case studies' page instead. These
> stories are also very important.
>
> 2. Causes of death including euthanasia and suicide are not excluded.
> Almost
> always the appalling mistreatment of M.E. patients and those given a 'CFS'
> misdiagnosis has played a significant part in these deaths. Please send
> these tragic stories also.
>
> 3. Please note that the M.E. memorial list will be a M.E. list (not a
> 'CFIDS' or 'CFS' or 'ME/CFS' list).
>
> 4. Causes of death in patients misdiagnosed with 'CFS' may include cancer,
> severe vitamin deficiency, thyroid or adrenal diseases, brain tumours,
> renal
> or liver disease, depression, PTSD and other mental illnesses (suicide)
> and
> so on: a vast array of unrelated conditions. Anyone who was (mis)diagnosed
> with 'CFS' instead of being given a correct diagnosis and who died partly
> or
> wholly as a result of this lack of appropriate medical care is invited to
> respond.
>
> The HFME feels there is a real need for both of these lists.
>
> Best wishes everyone,
> Jodi Bassett
> --
> The Hummingbirds' Foundation
> for Myalgic Encephalomyelitis:
> www.hfme.org
>
> After a variable interval, a multi-system syndrome may develop, involving
> permanent damage to skeletal or cardiac muscle and to other "end organs"
> such as the liver, pancreas, endocrine glands and lymphoid tissues,
> signifying the further development of a lengthy chronic, mainly
> neurological
> condition with evidence of metabolic dysfunction in the brain stem. Yet,
> stabilization, albeit at a low level, can still be achieved by appropriate
> management and support. The death rate of 10% occurs almost entirely from
> end-organ damage within this group (mainly from cardiac or pancreatic
> failure). It has to be said that suicide in younger patients and in
> earlier
> stages of the disability is related to the current climate of disbelief,
> rejection of welfare support and loss of educational and employment
> prospects. It is an additional and potentially avoidable factor.
> Dr Elizabeth Dowsett
>
> Probably the best descriptive definition of M.E. is found in Ramsay's book
> mentioned earlier or in the Doctoral Thesis of Dr. Andrew Wallace.
> Wallace's
> thesis discusses an epidemic in Cumberland in Northern England. It is
> unfortunate that more M.E. physicians have not read it. This thesis is
> important since it not only represents one of the best descriptions of the
> epidemic M.E. disease but also documents deaths associated with this
> illness. The deaths although few in number are important since not only do
> they give us a useful pathological insight, they also underline the
> potential and usually unrecognized severity of M.E. Documented deaths have
> occurred in several M.E. epidemics, but are best documented in the
> Cumberland epidemic and were well known in the Akureyri epidemic. All of
> these deaths involved CNS injury.
> Dr Byron Hyde
>

Question a doctor and lose your child - Times Online

2009-09-06T15:11:00.000-07:00

http://www.timesonline.co.uk/tol/life_and_style/health/article6823345.ece

Most Common Cause of Fatigue that is Missed or Misdiagnosed by Doctors

2009-09-05T13:53:00.001-07:00

this is the title of a useful article by Dr J Mercola, published today.
http://articles. mercola.com/ sites/articles/ archive/2009/ 09/05/Most- Common-Cause- of-Fatigue- that-is-Missed- or-Misdiagnosed- by-Doctors. aspx

A memorial list for M.E.

2009-09-05T09:02:00.000-07:00

A memorial list for M.E. (and a second for the 'CFS' misdiagnosed) from HFME
http://www.hfme. org/mememorialli st.htm

Have a say on ME care - Shields Gazette

2009-09-05T09:01:00.000-07:00

Have a say on ME care - Shields Gazette
Source: www.shieldsgazette.com
Have a say on ME care - ALMOST all of your readers will know someone with myalgic encephalopathy (ME).

World Health Organisation' s classification of ME and its relevance to the NICE guidelines.

2009-05-27T12:33:00.000-07:00

Dear All,

Criona Wilson, mother of Sophia Mirza, has just posted up a new webpage about the World Health Organisation' s classification of ME and its relevance to the NICE guidelines.

At the bottom of the page is a link to lists of MPs, Lords, media and the WHO itself.

http://www.sophiaandme.org.uk/ w.h.o.%20and% 20m.e..html

Permission to repost

ME still a mystery

2009-05-27T12:31:00.001-07:00

http://www.gazette-news.co.uk/features/health/4360774.ME_still_a_mystery/

I was a RAF high-flyer .. now I can barely get out of bed

2009-05-27T12:27:00.001-07:00

http://www.thescottishsun.co.uk/scotsol/homepage/news/article2433959.ece

Anouncement from the MEA website - may be reposted

2009-05-27T12:20:00.000-07:00

As part of the information gathering process in relation to establishing a UK post-mortem and tissue bank for ME/CFS research, Dr Charles Shepherd visited the Medical Research Council's Brain Banks in Edinburgh last week - where he met with Dr Colin Smith and Professor James Ironside.

The Edinburgh Brain Banks currently collect, store and provide tissue to researchers who are looking at a number of diseases - in particular HIV/AIDs (where tissue in addition to brain and nervous system is collected) and CJD. They also collect brain tissue from people without neurological disease for control purposes.

Dr Shepherd and Tony Britton will both be attending the Invest in ME Conference on Friday this week where they will have an information leaflet that summarises the current state of affairs regarding the establishment of a UK brain and tissue bank for ME/CFS research. Dr Shepherd and Tony Britton will also be very happy to talk to anyone who is interested in this aspect of ME/CFS research during breaks at the meeting.

Fundraising information for the MEA tissue bank initiative can be found at: www.walkingtheamazon.com - you can donate money via a link on the MEA charity page on this site or via the 'Just Four Quid' link on the MEA website: http://www.meassociation.org. uk

ENDS

Lismore artist is awarded 2009 ArtLinks Bursary

2009-05-27T12:08:00.000-07:00

http://www.munster-express.ie/entertainment/art/lismore-artist-is-awarded-2009-artlinks-bursary/

Mum-to-be Sarah also facing test of coping with ME

2009-05-27T12:07:00.000-07:00

http://www.echo-news.co.uk/echofeatures/health/4358973.Mum_to_be_Sarah_also_/

A LEEDS nurse and an ME patient have written a book which they hope will > help people cope with Chronic Fatigue

2009-05-27T12:06:00.000-07:00

http://www.yorkshirepost.co.uk/health/Fighting-back-in-the-battle.5264118.jp

Just Four Quid appeal

2009-05-27T12:05:00.000-07:00

(From Tony Britton)

MAY BE REPOSTED

The 'Just Four Quid' appeal which aims over the course of a year to
raise £1m for biomedical research into ME/CFS has declared this as
"The Week of Happy Ignorance".

Last week, appeal flagged up a large number of ways in which people can
save money on household bills. This week, their website suggests folk
take a holiday from all the troubles of the world by not buying papers
and even avoiding the news on radio, TV and the internet.

The organiser says in her latest blog:

"Quite a few people think that we see too much news. Journalist John
Naish, in his book "Enough", is one of them. He thinks that in
these days of 24-hour rolling news, we get a distorted idea of the world
through seeing the same footage of the latest horrors over and over
again. With the same images played repeatedly, we get the idea that the
world is much worse than it actually is; we forget that it's
"news" because it's rare.

"We also, he believes, forget that it's not local; much of what we
see on our TV news is happening thousands of miles away but our
primitive brains – wired to understand what's going on within
our Neolithic ancestors' walking range – doesn't really
register this and feels it has to keep watching the news for more
details of this "local and imminent" threat.

"Some psychologists feel that the stress that arises from the news is so
great that we shouldn't watch more than 30 minutes a day, in order
to avoid anxiety-related depression. For me, part of the
"holidayness" of any holiday is that I don't read the paper
and don't watch the news, so I can believe there's something in
this."

So how about adding "stress-buster" to the recession-busting elements of
JFQ and tip any savings made from not buying the papers this week into
the JFQ Appeal which benefits The ME Association's Ramsay Research Fund
and ME Research UK.
For more information about the Just Four Quid appeal, please click here