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
Tuesday 10 November 2009
Belfast Working Group: “Basket Weaving & Soft Toys”.
> 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.
>
>
> 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.
>
Sunday 1 November 2009
Belfast Working Group: A Shoestring Affair.
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
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
Monday 12 October 2009
Letters from ME sufferers in N.Ireland
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
Cheers
Antoinette
Friday 9 October 2009
Xenotropic murine leukemia virus-related virus - Wikipedia, the free encyclopedia
http://en.wikipedia.org/wiki/Xenotropic_murine_leukemia_virus-related_virus
Thursday 8 October 2009
Study isolates virus in chronic fatigue sufferers
http://news.yahoo.com/s/nm/20091008/sc_nm/us_fatigue_virus_1
Retrovirus_might_be_culprit_in_chronic_fatigue_syndrome
http://www.sciencenews.org/view/generic/id/48157/title/Retrovirus_might_be_culprit_in_chronic_fatigue_syndrome
Monday 5 October 2009
Belfast Marathon 3rd May 2010
Familyfights4me are recruiting volunteers for the Belfast Marathon, if interested please contact me.
All money raised will go to ME Research.
All money raised will go to ME Research.
Thursday 1 October 2009
Concern at closure of ME Clinic - Ballymena Today
http://www.ballymenatimes.com/news/Concern-at-closure-of-ME.5684375.jp
Friday 18 September 2009
Monday 14 September 2009
Could Some People Diagnosed With ME/CFS Actually Have Hashimoto's Encephalopathy
http://www.thyroid-info.com/hashimotos-encephalopathy.htm
John F. Kennedy's Addison's disease was probably caused by rare autoimmune disease
http://www.latimes.com/news/nationworld/nation/la-sci-jfk-addisons5-2009sep05,0,3275865.story
Friday 11 September 2009
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
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
http://www.breakspearmedical.com/files/chronic.html
Wednesday 9 September 2009
"Please donate £4 to help us reach our target for the JustFourQuid Campaign at
http://www.justgiving.com/Antoinette-Christie/
Belfast Marathon 3rd May 2010
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.
> *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
>
> 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
>
Sunday 6 September 2009
Question a doctor and lose your child - Times Online
http://www.timesonline.co.uk/tol/life_and_style/health/article6823345.ece
Saturday 5 September 2009
Most Common Cause of Fatigue that is Missed or Misdiagnosed by Doctors
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
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.
A memorial list for M.E. (and a second for the 'CFS' misdiagnosed) from HFME
http://www.hfme. org/mememorialli st.htm
http://www.hfme. org/mememorialli st.htm
Have a say on ME care - Shields Gazette
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).
Source: www.shieldsgazette.com
Have a say on ME care - ALMOST all of your readers will know someone with myalgic encephalopathy (ME).
Wednesday 27 May 2009
World Health Organisation' s classification of ME and its relevance to the NICE guidelines.
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
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
I was a RAF high-flyer .. now I can barely get out of bed
http://www.thescottishsun.co.uk/scotsol/homepage/news/article2433959.ece
Anouncement from the MEA website - may be reposted
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
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
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
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
http://www.yorkshirepost.co.uk/health/Fighting-back-in-the-battle.5264118.jp
Just Four Quid appeal
(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
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
Friday 15 May 2009
National Institute for Health & Clinical Excellence - coming to Belfast
Wednesday 20 May 2009
NICE wants to meet you and hear your questions.
NICE Public Board Meeting
Every two months the NICE Board holds its meeting in a different venue; moving from region to region to ensure that all those interested in our work can come along to hear about the latest developments at NICE and question the Board about policy.
NICE Question Time
A question time session is held before the main Board meeting. This session offers a great opportunity for you to raise any questions you have about our work and is open to the general public.
Carole Longson, Health Technology Evaluation Centre Director at NICE, will give a brief presentation on the latest work of the technology appraisal programme followed by a short presentation from Val Moore, Implementation Director at NICE. Attendees will have an opportunity to put their questions to Carole Longson, Val Moore and Andrew Dillon, Chief Executive at NICE.
NICE Question Time is open to the general public
NICE Question Time – Belfast
* Time: 12.30-1.30pm
* Lunch is provided from 12 noon.
NICE Board Meeting
* Time: 1.45pm
Venue:
Belfast City Hospital
51 Lisburn Road
Belfast
BT9 7AB
to book your place go to:
http://www.nice.org.uk/aboutnice/whoweare/board/boardmeetings/2009/20May2009.jsp
NICE wants to meet you and hear your questions.
NICE Public Board Meeting
Every two months the NICE Board holds its meeting in a different venue; moving from region to region to ensure that all those interested in our work can come along to hear about the latest developments at NICE and question the Board about policy.
NICE Question Time
A question time session is held before the main Board meeting. This session offers a great opportunity for you to raise any questions you have about our work and is open to the general public.
Carole Longson, Health Technology Evaluation Centre Director at NICE, will give a brief presentation on the latest work of the technology appraisal programme followed by a short presentation from Val Moore, Implementation Director at NICE. Attendees will have an opportunity to put their questions to Carole Longson, Val Moore and Andrew Dillon, Chief Executive at NICE.
NICE Question Time is open to the general public
NICE Question Time – Belfast
* Time: 12.30-1.30pm
* Lunch is provided from 12 noon.
NICE Board Meeting
* Time: 1.45pm
Venue:
Belfast City Hospital
51 Lisburn Road
Belfast
BT9 7AB
to book your place go to:
http://www.nice.org.uk/aboutnice/whoweare/board/boardmeetings/2009/20May2009.jsp
Monday 11 May 2009
ME Awareness month
SIR - I am writing to draw your readers' attention to the month of May being ME Awareness month.
Myalgic Encephalomyelitis (ME), sometimes also referred to as Chronic
Fatigue Syndrome (CFS) has been a much misunderstood illness by the general
public. It is estimated to affect at least 250,000 people in the UK. It is
not just about feeling tired all the time but a debilitating and distressing
condition, which is classified by the World Health Organisation as "a
disease of the central nervous system".
The illness may develop gradually or occur as a result of an acute infection
or virus. There is NO CURE for M.E,eventhough it is estimated to affect 250,000 people in the UK many of them chidren.
M.E can be a very frightening, isolating, painful,and severely life limiting illness.
Some of the symptons are,
difficulties with memory and concentration,
Sensitivity to noise and light
Swollen glands, mouth ulcers,
Trouble with balance and coordination,
Vision, hearing
Digestive problems, IBS, headaches,
Poor temperture control, Severe Nausea
Pain in muscles, joints, head, back, limbs, chest and stomach
Muscular weakness and twitching is common
This is only some of the symptons, there are to many to list.
National surveys have revealed that 25% of people with the illness were so
severely affected that they have at some time been housebound or bedbound
and that over 70% of adults had lost their jobs. Lets not forget about the children with ME. Kids who develop M.E in their teens go into adulthood having lost all their social contact, living each day in Pain and very liitle understanding or help fom the medical profession. Not only have M.E sufferers have to put up with this terrible Chronic virtually invisable illness they also have to put up with the disbelief that comes along with it.
Inappropriate educational demands impede recovery and are a key cause of relapse in children.
Energy Efficient Education (home tuition, distance or virtual learning) can maximise achievement whilst protecting health.
Social contact can be preserved through visits from school and friends and through making new friends who understand the limitations imposed by the illness, for example, through the Trust.
Children with ME are legally entitled to education suited to their medical and special educational needs.
ME/CFS can affect anyone at any age and from any ethnic group
More research is needed to improve diagnosis and find effective treatments
To date in Belfast we have now raised just over £16,000 for biomedical research into ME and this has helped immensely towards better understanding this debilitating neurological illness. It has only been with the help of people like yourselves who give money and attend our fundraisers that we can give hope to the many people living with ME. Unfortunately the governments continuing refusal to fund biomedical research into ME means that it is vital that we raise even more money in order to find the cause of this illness and therefore a cure for the 7,000 children and adults living with this condition in Northern Ireland, and the 250,00 sufferers in the UK.
We have just took part in the Belfast Marathon for the 3rd year in aid of ME Research and donations are still coming in. Anyone still wanting to make a donation can do so up until August by visiting www.justgiving.antoinettechristie or you can phone me on 07809370811 or Jeanette on 0793637881.
Myalgic Encephalomyelitis (ME), sometimes also referred to as Chronic
Fatigue Syndrome (CFS) has been a much misunderstood illness by the general
public. It is estimated to affect at least 250,000 people in the UK. It is
not just about feeling tired all the time but a debilitating and distressing
condition, which is classified by the World Health Organisation as "a
disease of the central nervous system".
The illness may develop gradually or occur as a result of an acute infection
or virus. There is NO CURE for M.E,eventhough it is estimated to affect 250,000 people in the UK many of them chidren.
M.E can be a very frightening, isolating, painful,and severely life limiting illness.
Some of the symptons are,
difficulties with memory and concentration,
Sensitivity to noise and light
Swollen glands, mouth ulcers,
Trouble with balance and coordination,
Vision, hearing
Digestive problems, IBS, headaches,
Poor temperture control, Severe Nausea
Pain in muscles, joints, head, back, limbs, chest and stomach
Muscular weakness and twitching is common
This is only some of the symptons, there are to many to list.
National surveys have revealed that 25% of people with the illness were so
severely affected that they have at some time been housebound or bedbound
and that over 70% of adults had lost their jobs. Lets not forget about the children with ME. Kids who develop M.E in their teens go into adulthood having lost all their social contact, living each day in Pain and very liitle understanding or help fom the medical profession. Not only have M.E sufferers have to put up with this terrible Chronic virtually invisable illness they also have to put up with the disbelief that comes along with it.
Inappropriate educational demands impede recovery and are a key cause of relapse in children.
Energy Efficient Education (home tuition, distance or virtual learning) can maximise achievement whilst protecting health.
Social contact can be preserved through visits from school and friends and through making new friends who understand the limitations imposed by the illness, for example, through the Trust.
Children with ME are legally entitled to education suited to their medical and special educational needs.
ME/CFS can affect anyone at any age and from any ethnic group
More research is needed to improve diagnosis and find effective treatments
To date in Belfast we have now raised just over £16,000 for biomedical research into ME and this has helped immensely towards better understanding this debilitating neurological illness. It has only been with the help of people like yourselves who give money and attend our fundraisers that we can give hope to the many people living with ME. Unfortunately the governments continuing refusal to fund biomedical research into ME means that it is vital that we raise even more money in order to find the cause of this illness and therefore a cure for the 7,000 children and adults living with this condition in Northern Ireland, and the 250,00 sufferers in the UK.
We have just took part in the Belfast Marathon for the 3rd year in aid of ME Research and donations are still coming in. Anyone still wanting to make a donation can do so up until August by visiting www.justgiving.antoinettechristie or you can phone me on 07809370811 or Jeanette on 0793637881.
Tuesday 5 May 2009
Belfast Marathon Blog - In Aid of ME Research
In Aid of ME Research May 4th 2009
Today did not start of promising. With rain forecast, we dug out the old rain coats and made our way to the City Hall to cheer on Paul and Chris who were running the first and second leg of the Relay of the Belfast City Marathon (6 miles & 3.5 miles)). Jeanette and Sandra joined them in Bridge Street for the 2nd leg, and we were joined by Paul and Leanne, making our way up the Falls, Clonard, onto the Springfeild Road and through to Lanark Way. We were greeted on the Shankill by our Auntie Margaret, and finally completed the 2nd leg of the relay at Hillview Road (3.5 miles). We then had a lovely walk back home. Sam our veteran runner continued on for the next 2 legs from Hillview Road to Gideon's Green (7.1 miles) and then onto Corporation Street (4.8 miles). Not having had enough fun, Jeanette Paul, and Leanne joined me for the final run in from Corporation Street to the Ormeau Park (4.8 miles). We had a lovely run along the embankment, with lovely views across to Ormeau Park. Jeanette did consider swimming across, it was very tempting, but alas decided to struggle on. The last mile was the killer - someone definitely was moving the gate to the Park, or maybe it just felt that way. We had great encouragement along the way, mind you if we the heard the words "not long now" one more time we thought we might have to punch someone (god bless them). Paul went through the finish line at 3 hours 24 minutes without his timing tag lol, I struggled through in 3hrs 34 miniutes with Jeanette and Leanne close behind. We then made our way back out of the park another 2 mile jaunt to the van for our pick up.
Bloody hell, we thought, how are we going to beat that next year.
Anyone wishing to sponsor us can still do so on our Just giving page at:
http://www.justgiving.com/antoinette...
Big thank you to all our supporters and sponsors, to Chris and Sam for their continued support throughout the years, to Leanne, who was a wee star and great running partner. Thank you to the Apartment at the City Hall, for the lovely coffee and use of the their facilities. Well done to all those who participated along the way, in particular the guys running for the Alzheimer's Society, who we met and chatted with at the City Hall.
2010 here we come!
Bloody hell, we thought, how are we going to beat that next year.
Anyone wishing to sponsor us can still do so on our Just giving page at:
http://www.justgiving.com/antoinette...
Big thank you to all our supporters and sponsors, to Chris and Sam for their continued support throughout the years, to Leanne, who was a wee star and great running partner. Thank you to the Apartment at the City Hall, for the lovely coffee and use of the their facilities. Well done to all those who participated along the way, in particular the guys running for the Alzheimer's Society, who we met and chatted with at the City Hall.
2010 here we come!
ME Research UK and the ME Association have joined forces in the `Just Four Quid' campaign
ME Research UK and the ME Association have joined forces in the `Just Four Quid' campaign which will use the internet to encourage donors to take advantage of weekly money-saving tips, and then give some of the money they save to the appeal.
The campaign will begin on 12 May 2009 – International ME Awareness Day – and last for a full year.
It will be run through a credit-crunching daily blog at
www.justfourquid.com
ME/CFS: Classification Issues
| ME/CFS: Classification Issues | |||
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| Permission to Repost http://www.meactionuk.org.uk/ME_CFS_... Margaret Williams 3rd May 2009 | |||
Saturday 2 May 2009
Campaigning for Research into ME (RiME)
Permission to Repost
Campaigning for Research into ME (RiME)
NHS Services Inquiry
RiME's Comments re. Surveys for Services Inquiry was sent to Dr Turner today 29/4/09 (below).
We encourage ME patients and carers to write in (those who can). If you do, please send us copies. We feel it useful in these situations to have a bank of comments. If those running the Inquiry were to publish in 2010 a favorable report and say 'we had few, if any, adverse comments' at earlier stages of the process, that comment can then be rebutted (remember Lord Turnberg's remark re. the Royal Colleges Report in the House of Lords Jan. 04?).
Comments to turnerd@parliament. uk (in word format) or Dr Des Turner MP, 179 Preston Road, Brighton, BN1 6AG by May 5.
Note: the May 5 deadline is for surveys comments (oral and written evidence comes later).
RiME will shortly be setting up a new folder on its website entitled 'Services Inquiry'. It will contain information on the Terms of Reference, RiME's responses, and others' comments.
Campaigning for Research into ME (RiME)
NHS Services Inquiry
RiME's Comments re. Surveys for Services Inquiry was sent to Dr Turner today 29/4/09 (below).
We encourage ME patients and carers to write in (those who can). If you do, please send us copies. We feel it useful in these situations to have a bank of comments. If those running the Inquiry were to publish in 2010 a favorable report and say 'we had few, if any, adverse comments' at earlier stages of the process, that comment can then be rebutted (remember Lord Turnberg's remark re. the Royal Colleges Report in the House of Lords Jan. 04?).
Comments to turnerd@parliament. uk (in word format) or Dr Des Turner MP, 179 Preston Road, Brighton, BN1 6AG by May 5.
Note: the May 5 deadline is for surveys comments (oral and written evidence comes later).
RiME will shortly be setting up a new folder on its website entitled 'Services Inquiry'. It will contain information on the Terms of Reference, RiME's responses, and others' comments.
ME/CFS: TERMINOLOGY
ME/CFS: TERMINOLOGY
Permission to Reposthttp://www.meactionuk.org.uk/ ME_CFS_TERMINOLOGY.htm
ME/CFS: TERMINOLOGY
Evidence that ME/CFS is not a somatisation disorder
Evidence that ME/CFS is not a somatisation disorder
Permission to Repost
http://www.meactionuk.org.uk/ME_CFS_...
Evidence that ME/CFS is not a somatisation disorder
Margaret Williams 26th April 2009
http://www.meactionuk.org.uk/ME_CFS_...
Evidence that ME/CFS is not a somatisation disorder
Margaret Williams 26th April 2009
The subject of the MEA website survey for May is how much have you spent on treatments for ME/CFS th
MAY BE REPOSTED
The subject of the MEA website survey for May is how much have you spent on treatments for ME/CFS that are not available on the NHS.
Vote via the MEA website at: http://www.meassociation.org. uk
Thank you to everyone who voted in the April survey on trigger factors. This was the largest response to a website poll so far recorded and is probably the largest result of patient evidence on this topic. The results can be found on the MEA website as well - along with those for all our other monthly surveys.
Thursday 2 April 2009
MAY BE REPOSTED
The April MEA on-line poll is looking at what was the main trigger factor in
the onset of your ME/CFS.
You can vote via the homepage of the MEA website at:
http://www.meassociation.org. uk
Results from all of our previous polls - flu vaccination; GP knowledge and
skills; NHS management; NICE guideline; post-mortem research - can be found
in the results section.
ENDS
the onset of your ME/CFS.
You can vote via the homepage of the MEA website at:
http://www.meassociation.org. uk
Results from all of our previous polls - flu vaccination; GP knowledge and
skills; NHS management; NICE guideline; post-mortem research - can be found
in the results section.
ENDS
Kevin Tripp.s killer got just 4 years.
http://www.thesun. co.uk/sol/ homepage/ news/article2355 903.ece
Wednesday 1 April 2009
Belfast Marathon
Please sponsor me in taking part in the Belfast Marathon in aid of ME Research, go to http://www.justgiving.com/antoinette..."
Friday 13 March 2009
Permission to Repost
Permission to Repost
http://www.meaction uk.org.uk/ Compilation_ of_Professional_ concerns. htm
Examples of concerns raised by professional bodies about the NICE (draft)
Guideline CG53 on "CFS/ME"
http://www.meaction uk.org.uk/ Compilation_ of_Professional_ concerns. htm
Examples of concerns raised by professional bodies about the NICE (draft)
Guideline CG53 on "CFS/ME"
Judicial Review case Lost
Judicial Review case Lost Friday 13th March
High Court supports ME treatments that are ineffective or harmful.
High Court supports ME treatments that are ineffective or harmful.
Monday 16 February 2009
Belfast Marathon May 4th 2009
Now Recruiting for the Belfast Marathon May 4th,in aid of awareness & funds for Myalgic Encephalomyelitis (ME). Get in touch if interested "
Friday 6 February 2009
ME Association
Please Repost
http://www.meassociation.org. uk/content/ view/781/ 161/
ME Association fully supports legal challenge to the NICE Guideline on
ME/CFS
The ME Association will be fully supporting the two people with ME - Douglas
Fraser and Kevin
Short - who have succeeded in achieving a Judicial Review into the 2007 NICE
Guideline on ME/CFS.
The Judicial Review, which could result in the NICE guideline being
withdrawn, is taking place at the Royal Courts of Justice in The Strand,
London on 11 and 12 February.
The four key reasons why the MEA believes the NICE guideline on diagnosis
and management of ME/CFS is unfit for purpose are as follows:
* NICE has broadened the diagnostic criteria as to what can be
diagnosed as ME/CFS.
* NICE advocates a "two sizes fits all" approach to management in that
far too much emphasis is being placed on the role of cognitive behaviour
therapy (CBT) and graded exercise therapy (GET) - treatments that
significant numbers of people with ME/CFS consistently report to be either
ineffective or even harmful in the case of graded exercise.
* NICE has failed to provide adequate information on symptomatic
relief, particularly in the area of pain control.
* NICE has failed to properly address, or not addressed at all, many
of the important non-drug aspects of management such as benefit provision;
diet and nutrition; and occupational health.
The MEA believes that our decision to classify the ME/CFS guideline as
'unfit for purpose' has widespread support from our membership. In an
on-line survey of public opinion carried out via the MEA website in
December, 91% of those who took part supported the MEA position, only 6% did
not.
The current online poll on NHS service provision also suggests that
following implementation of the NICE guideline in August 2007, people with
ME/CFS do not believe that they are receiving the sort of management advice
that should be available from both general practice and hospital based
services. Current ratings for NHS service provision being: 47% - very poor;
22% - poor; 15% - no longer use the NHS; 8% - average; 6% - good and 2% -
excellent.
More information on the practicalities of attending the Judicial Review can
be found by clicking <http://www.nicemeco urt.co.uk/> HERE.
Note to Editors:
For more details about the ME Association' s position, please contact:
Tony Britton, Publicity Manager, The ME Association
Tel: 01406 370293 Mob: 07880 502927 Email
Thursday 5 February 2009
Judicial Review – Needs YOU
Hi –
Permission to Repost
Judicial
Review – Needs YOU
Yes
it certainly does and the questions as to what you can do may be many, so based
on what I’ve read on the mails let’s see if I can allay any fears
Venue:
Court-Room 76 The Royal Courts of Justice, The Strand, London
Dates: 11 & 12 Feb. Times: 10:00/10.30 start 13:00- 14:00 Lunch 16:30/17:00 End
So
how can you help?
Court
Room 96 holds over 100 people and doesn’t include counsel. It has a speaker
system, the seats are movable and light. More space can be made and spaces for
wheelchair. Extra seats can be got from the court next door if needed.
Outside the court there is some seating in recesses around a small lobby and
then 2 quiet rooms for people attending the court. Disabled loos on the same
floor.
The ushers and they understand that people will be attending who need water
during the day and people with low blood sugar, who may need to eat a small
biscuit every now and then. It was the same as other disabled groups who have
attended cases there. So anyone coming can bring their own little survival pack
and quietly use these rooms.
For public
conveniences outside the Royal Courts of Justice on The Strand.
There is
one (for men and for women) located in a traffic "island" in the
middle of the Road just outside and opposite the RCJ.
What is
needed in my opinion is, as many as possible to come even if it is for a
short period, if you are a morning person or an afternoon person, come when you
can and when you gotta go, you gotta go. The fact of a changing audience is three
fold. If the Judge sees the transition of the audience.
1. It shows there are more with the
illness.
2.
It shows its
severity and unpredictability.
3. It shows that there is support
from those who matter, the rank and file.
I’ll be
there, how about you? Or should I say “yes I bloody well will”.
Trev
_________________________________________________________________
------------------------------------
Permission to Repost
Judicial
Review – Needs YOU
Yes
it certainly does and the questions as to what you can do may be many, so based
on what I’ve read on the mails let’s see if I can allay any fears
Venue:
Court-Room 76 The Royal Courts of Justice, The Strand, London
Dates: 11 & 12 Feb. Times: 10:00/10.30 start 13:00- 14:00 Lunch 16:30/17:00 End
So
how can you help?
Court
Room 96 holds over 100 people and doesn’t include counsel. It has a speaker
system, the seats are movable and light. More space can be made and spaces for
wheelchair. Extra seats can be got from the court next door if needed.
Outside the court there is some seating in recesses around a small lobby and
then 2 quiet rooms for people attending the court. Disabled loos on the same
floor.
The ushers and they understand that people will be attending who need water
during the day and people with low blood sugar, who may need to eat a small
biscuit every now and then. It was the same as other disabled groups who have
attended cases there. So anyone coming can bring their own little survival pack
and quietly use these rooms.
For public
conveniences outside the Royal Courts of Justice on The Strand.
There is
one (for men and for women) located in a traffic "island" in the
middle of the Road just outside and opposite the RCJ.
What is
needed in my opinion is, as many as possible to come even if it is for a
short period, if you are a morning person or an afternoon person, come when you
can and when you gotta go, you gotta go. The fact of a changing audience is three
fold. If the Judge sees the transition of the audience.
1. It shows there are more with the
illness.
2.
It shows its
severity and unpredictability.
3. It shows that there is support
from those who matter, the rank and file.
I’ll be
there, how about you? Or should I say “yes I bloody well will”.
Trev
_________________________________________________________________
------------------------------------
Thursday 15 January 2009
ME Treatment is a National Scandal
| ME Treatment is a National Scandal | |||
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Anyone wishing to can forward a petition to their MP - copy the petition letter at the site below. http://sophiaandme.org.uk/petitionmp... | |||
Saturday 10 January 2009
X Factor Tickets
2 X Factor Tickets up for Auction for Wednesday 18th March 2009.
Email me if interested, Money raised will help raise awareness into ME.
Email me if interested, Money raised will help raise awareness into ME.
Tuesday 6 January 2009
ME Fundraiser in the Felons on Friday 17th October 2008,
ME Fundraiser in the Felons on Friday 17th October 2008,
Can I once again thank all who attended our ME Fundraiser in the Felons on Friday 17th October 2008, especially the sufferers who attended I know how difficult that was for you. Some people with ME can look quite well to the outsider, but if you look closer you will have seen signs of their illness, the steady decline in their appearance as the night progressed. You would have seen the colour literally drain from them as their energy levels dropped and in conversation would have noticed their loss of concentration and or ability to keep track of the conversation. In order for Bernie, Una and Alison to attend our fundraiser they will have had to pace themselves both physically and mentally for weeks or months prior to the event. Afterwards they would have to deal with an increase in their symptoms including muscle and joint paint and debilitating fatigue which will most likely end up with them being bedridden for sometime afterwards. Yet they came, but at a cost to their own health and wellbeing and we applaud them for their continued courage in dealing with this awful illness.Thanks to the Felons for letting us have use of their premises and covering the cost of our disco.
Thanks again for all those who donated gifts for our ballots and auction, Maire Therese, Joanne (Zest), Colleen (Sunkissed), Joe (Party Solutions) Fancy Fayre, Dougie (Orchardville).
A special thank you to the young ones who give up their time to entertain us, Shona Cosgrove, Paula Mc Manus and Boys in the Corner. Thank you to Colin Welsh who did our disco and donated his wage to our campaign.
Thank you also to our Lord Mayor Tom Hartley who took time to attend and speak at our function, hopefully a few more people will be educated into the disabling effects of ME, and hopefully we will have brought ME into the public consciousness.
Thank you to Paul Mc Cusker of Feile FM for his continuous support in helping me raise awareness into the debilitating illness ME
In 2009, familyfights4me will be supporting 2 ME sufferers in their campaign against the NICE guidelines for ME. This is to take place at the High Court in London on 11th-12th February 2009. NICE are advocating CBT and GET as the primary intervention for ME and there is no credible evidence to support the claim that these treatments are effective This is akin to telling cancer sufferers that if they would only change the way they think about their illness, they will improve and despite reports from a huge number of sufferers who feel that GET made them worse. CBT/GET cannot correct the damage that has been shown to occur in the central and autonomic nervous system, the cardiovascular system, the immune system, the endocrine system and the gastro-intestinal system of those with ME/CFS. The most recent UK death from ME/CFS occurred in May 2008 when a severely affected woman died in the North of England; her death certificate gives "Myalgic Encephalomyelitis" as the cause of death.
To date in Belfast we have now raised just over £16,000 for biomedical research into ME and this has helped immensely towards better understanding this debilitating neurological illness. It has only been with the help of people like yourselves who give money and attend our fundraisers that we can give hope to the many people living with ME. Unfortunately the governments continuing refusal to fund biomedical research into ME means that it is vital that we raise even more money in order to find the cause of this illness and therefore a cure for the 7,000 children and adults living with this condition in Northern Ireland, and the 250,00 sufferers in the UK.
Many Thanks again to all who attended and donated to our fundraiser.
Antoinette & Paul Christie/ Jeanette Marley
Familyfightsforme.
Monday 5 January 2009
G4 Star suffers from ME? - Daily Mail article
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| To read article - click on link below http://www.dailymail.co.uk/health/ar... | |||
ME Help - Article in Andersonstown News
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| ME help MOST help lines and chat lines are only open during office hours on weekdays and closed at weekends and on public holidays, including Christmas and New Year, when people want and need them most. Now M.E. Free For All. org can offer a global round-the-clock, 365 days a year, service, thanks to the invention of Skype (rhymes with "pipe")! Skype is a relatively new technology, which allows a broadband user to talk from one computer to any other computer, anywhere in the world, free of charge. There are some extra services that can be bought from Skype but the basic service, which we use, is free. For those who don't already have Skype, we have full details of how to get it on our website but it really is as easy as 1-2-3. Ready? 1. Go to www.skype.com and click the big green "download" button, 2. Follow the instructions to create your Skype account and choose your Skype name, 3. Start building your Skype contacts. It is fairly straight forward for even the most terrified technophobe but if you do get stuck and don't have anyone to help you, you can e-mail John at drjohngreensmith@mefreeforall.org and we'll get you started. If you want to speak to somebody, you will need a microphone, which you can buy online or a an electrical shop but it is still worth downloading since, even if you do not have a microphone, you can send in stant messages straight away. Once you get connected, you will be able to talk about anything at all, including this awful illness, M.E. (Myalgic Encephalomyelitis) and any other problems, like benefits, with any of us, who have similar experiences. You can also add any friends or family you already have and we can add more new ones to your growing list. As you get more experienced and confident, you can add other features, such as three-or four-way conversations, play games and you can add a web cam if you want the person you're calling to see you, or turn it off if you prefer. Our SkypeMEFree service is to complement our M.E. Christmas blog and Christmas M.E. constituencies forum, where you can have some good, light-hearted exchanges with others on any subject apart from M.E., and where you may meet some new friends who, perhaps you didn't know, live only a few streets away. You can also ask for help with such things as a lift to the doctor's, shopping, housework or gardening. Yours sincerely, Dr John H Greensmith | |||
Judicial Review of the NICE Guidelines
Please watch the video below
http://uk.youtube.com/watch?v=uojoJ07OktE
http://uk.youtube.com/watch?v=uojoJ07OktE
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| Anyone requiring further information can go to the website below website: http://www.nicemecourt.co.uk/ | |||
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