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Hereford Group highlighted on AfME -

23/7/2015

www.actionforme.org.uk/get-informed/news/daily-press-summary/headmaster-goes-extra-mile-for-me

M.E./CFS support in Hereford
The Herefordshire CFS/M.E./FMS Group is a self-supporting, voluntary organisation which meets at 2.30pm on the first Saturday of every month (except for January) in the Aspire Community Hub, Canal Road, Hereford. A typical meeting will be good humoured and may have a guest speaker on a topic of interest. The next meeting will be on 1 August.
Hereford Times, online
23/07/15

Full article in the Hereford Times -

www.herefordtimes.com/news/13494677.Your_Herefordshire_County_Times__Aymestrey_and__Leinthall_Earls_to_Yarkhill__July_23__2015/

THE HEREFORDSHIRE CFS/ME/FMS GROUP – The Herefordshire CFS/ME/ FMS Group is a self-supporting, voluntary organisation which supports those who suffer from chronic fatigue syndrome, myalgic encephalomyelitis, and fibromyalgia syndrome. The group meets regularly at 2.30pm (doors open at 2.15pm) on the first Saturday of every month (except for January) in the Aspire Community Hub (formerly the Canal Road Day Centre) in Canal Road in Hereford. These are debilitating illnesses and symptoms can include profound exhaustion, fatigue, stomach and digestive problems (including irritable bowel syndrome), flu like symptoms, memory and concentration loss, disturbed unrefreshing sleep, intolerances/ increased sensitivity, severe pain, widespread pain and stiffness and many others.

Anyone can develop these illnesses at any age. The causes are not yet fully known, but can develop after trauma, illness and accidents. It must be stressed that the Herefordshire CFS/ME/ FMS Group is a support group that really lives up to its name and includes people from all walks of life.

Members do their best to help fellow sufferers and really care about each other.

If anyone thinks they might show the symptoms of fibromyalgia, chronic fatigue syndrome or myalgic encephalomyelitis, their first action should be to visit their GP.

Treatment is available to ease some symptoms, although they are unlikely to disappear completely. To non-sufferers the presence of CFS, ME and FMS is often not readily identifiable, but group members are fully aware of the problems and can share their experiences.

A typical meeting will be good humoured and may have a guest speaker on a topic of interest but members will always be updated with any relevant news on new research, medications, forthcoming events and absolutely anything that might help to alleviate their symptoms. The next meeting will be on August 1. New members are always welcome.

Anyone with any queries is asked to call Jenni on 01432 271536.

Parliamentary debate on the treatment of fibromyalgia

15/7/2015

July 2015

Parliamentary debate on the treatment of fibromyalgia
Alok Sharma leads debate on treatment of fibromyalgia
1st July 2015 Alok Sharma leads a Parliamentary debate on the treatment of the incredibly debilitating condition fibromyalgia and what can be done to improve sufferers’ quality of life.
www.aloksharma.co.uk/content/alok-sharma-leads-debate-treatment-fibromyalgia

Report from FMA UK

Debate in the Parliament on fibromyalgia
www.fmauk.org/latest-news-mainmenu-2/articles-1/1004-debate-on-fibromyalgia-in-the-parliament
30 July 2015 Alok Sharma MP (Reading West) introduced a Westminster Hall debate on fibromyalgia on 1st July 2015 initiated through contact with the Reading fibromyalgia support group.

The debate was attended by only 7 MPs and a junior minister from the Department for Business, Innovation and Skills George Freeman MP. We are pleased that there were representatives from all over the UK. There were 4 members of the public attending, including two representatives from Fibromyalgia Action UK. The relatively low attendance was in part due to the relative lack of notice that was given for the meeting but we hope that a future event will allow us to increase the attendance

However we know from social media activity that there was a good interest from the fibro community across the country with many people watching the debate on Parliament TV live and afterwards as well. The debate lasted 30 minutes, started by the debate organiser, Alok Sharma MP, who gave a 10 minute opening speech.

Mr Sharma stated that he hoped to raise the profile of fibromyalgia through his debate, which is not a well-known condition by the public.

Jim Shannon (Strangford, Northern Ireland) raised concerns that many GPs are not aware of the symptoms and called for a greater awareness of the condition amongst GPs.

David Jones (Clywd West, Wales) noted that many of the treatment centres were based in England and that for Welsh patients to attend was an extremely bureaucratic process. It has been mentioned that the care pathway is better developed in England than in Wales. The minister present, Mr George Freeman said that he will write to NHS Wales and ask them to consider adopting the care pathway that is being currently used in England.

Mr Sharma went on to speak of the condition and its symptoms. He spoke about the experiences of patients from his constituency and called for knowledge of the condition amongst GPs and healthcare professionals to be improved. He has also called for a strategy of integrated multidisciplinary treatments to be introduced and for “a network of fibromyalgia clinics across the country.”

Mr Sharma has outlined the good practice and the good model of care that fibromyalgia patients in his constituency receive. He praised the multidisciplinary approach provided by Royal Barts Hospital and the Berkshire Pain Clinic. He said that he has written to North West Clinical Commissioning Group (CCG) and asked for awareness of fibromyalgia to be actively pursued amongst healthcare professionals.

Mr Sharma has also raised the difficulties and discrimination at work that fibromyalgia patients sometimes face. He said that it is ‘’completely unacceptable.’’

It was also mentioned that the merger of FMA UK and FibroAction into Fibromyalgia Action UK took place recently and outlined the work the charity does to support patients, for example the provision of national helplines and support to local groups throughout the UK which are supported by a volunteer group of regional coordinators.

To summarise, Mr Sharma has called for three things:
1. Improved education on fibromyalgia amongst GPs.
2. Development of nation-wide strategies for integrated holistic services encouraging patients’ empowerment.
3. Network of fibromyalgia clinics across the country.

The minister George Freeman welcomed the merger of FMA UK and FibroAction which he said would “help give a stronger patient voice to those who are affected.” He spoke about the very important role charities play and the role of social media, which charities can harness to empower patients and speak with one voice.

Mr Freeman went on to outline the difficulties and challenges in diagnosing the condition and responded to the points raised by Mr Sharma. He has said that one of the problems is that there is ‘’no clear diagnostic test’’ for fibromyalgia. He has praised that there is available in some parts of the country a free online course for GPs on musculoskeletal conditions, which also includes information on fibromyalgia. He also mentioned about some treatment tools available to GPs, like the Map of Medicine.

The minister mentioned the progress of appointing Dr Peter Kay, the first National Clinical Director for musculoskeletal conditions. Mr Freeman outlined the Department of Health’s plans to develop specialised person-centred care to 50 million people with long term conditions in England.

With regards to treatment centres, the minister stated that these were spread evenly across England and it was a matter for the devolved administrations to ensure that they also provided such services. Mr Freeman however promised to write to Dr Martin McShane, NHS England's National Director for Patients with Long Term Conditions, and ask for support of development of multidisciplinary specialist centres in England.

Mr Freeman noted that the Department for Health had increased medical research to over £1bn a year however acknowledged that the National Institute for Health Research (NIHR) did not have any fibromyalgia projects ongoing. The Minister has echoed Mr Sharma’s concerns about discrimination at work of employees living with fibromyalgia and he has also stated that this is ‘’completely unacceptable’’. He did not call for any action on this matter. He has stated that currently the protection of employees living with a disability is included in the Equalities Act and that employers are required by law to make reasonable adjustments.

Fibromyalgia Action UK thinks that this is not enough and that work needs to be initiated to educate employers about fibromyalgia and of ways of supporting employees living with this condition. Fibromyalgia Action UK will seek cooperation with bigger organisations working in the musculoskeletal conditions field to obtain and disseminate good practice for employers and to raise this matter separately with relevant ministers. Fibromyalgia Action UK is also working on development of an information booklet for employers on how to support employees living with fibromyalgia.

The issue not outlined by Mr Freeman is that sometimes employers do not accept that fibromyalgia can leave a person disabled and in need of additional support. It is difficult for employees struggling with fibromyalgia to fight their case in these situations. Another problem is when employees have not being diagnosed, as they may not even know that they are protected under the Equality Act. We know that living with fibromyalgia often means that others do not believe that patients suffer from a real and disabling condition as they look fine from the outside. In such situations it is very difficult for employees to fight for their rights at work, especially if employers do not understand the condition, or are discriminatory. Prolonged diagnosis, which runs sometimes to many years, makes a bad situation much worse. Therefore Fibromyalgia Acton UK will take steps to address this issue and will raise it with decision makers.

The debate is still available to view here http://sh.fmauk.org/commonstv1 for those that have not managed to see it as yet.

Regards, FMA UK , Board of Trustees

All Party Parliamentary Group (APPG) on ME: New officers

15/7/2015

July 2015

All Party Parliamentary Group (APPG) on ME -
new officers

Following announcement on Action for ME (AfME) and ME Association (MEA) websites

The APPG on M.E.: new officers
www.actionforme.org.uk/get-informed/news/policy-and-campaigns/the-appg-on-me-new-officers
8 July 2015 All-Party Parliamentary Group on ME | now officially re-registered | 8 July 2015
www.meassociation.org.uk/2015/07/all-party-parliamentary-group-on-me-now-officially-re-registered-8-july-2015/ The All-Party Parliamentary Group (APPG) on M.E. has been officially re-registered following the inaugural election of officers on Wednesday 1 July at the House of Lords.

The Countess of Mar was re-elected and new officers were elected for the remaining positions. The named Officers of the APPG are now:

Chair: Sir Peter Bottomley MP
Co-Chair: Countess of Mar
Vice-Chair: Mark Tami MP
Secretary: Jacob Rees-Mogg MP

The APPG on M.E. aims to improve the lives of people with M.E. by working collaboratively to stimulate greater understanding and awareness of the illness and tackling key policy areas to improve outcomes for people affected by M.E.

The group will now be listed in the official Register of All-Party Parliamentary Groups and consists of backbench Members of the Houses of Commons and Lords. Although it does not have any formal powers, it plays an important role in drawing the attention of MPs, Ministers and Lords to M.E. related issues.

Thank you to everyone who encouraged their newly elected (or re-elected) MP to join.

Hereford Group highlighted on AfME -

Parliamentary debate on the treatment of fibromyalgia

All Party Parliamentary Group (APPG) on ME: New officers

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