LIVING WITH ME

The Rt Hon James Purnell MP, Secretary of State for Work and Pensions, has agreed to address the next APPG on M.E., about the Welfare Reform Green Paper, No one written off: reforming welfare to reward responsibility.

The meeting will take place 3-5pm, Wednesday 8 October in Committee Room 18, House of Commons. (Please note that the start time has changed; it was previously planned for 1pm).

http://www.meassociation.org.uk/content/view/653/70/

This website presents the findings of our 2008 survey, to which 2763 people responded (1799 in hard copy, 964 online).

As with any survey of this type, respondents were self-selecting, therefore they cannot be assumed to be representative without systematic sampling to avoid intrinsic bias. Over 59% of respondents have had the illness for more than five years and of those, 34% have been ill for over 10 years, so the sample could be skewed to reflect the experiences of people who have been ill for a long time

http://afme.wordpress.com/

A new questionnaire for carers about the recent Welfare Reform Green Paper, No one written off: reforming welfare to reward responsibility, is now online.

http://www.afme.org.uk/news.asp?newsid=370

A questionnaire about the recent Green Paper on welfare reform is now available to complete online, focusing on the welfare benefits and employment experiences of people with M.E.

http://www.afme.org.uk/news.asp?newsid=368

The Green Paper on Welfare Reform, presented in the House of Commons today, is now available online and will be open for consultation until 22 October.

http://www.afme.org.uk/news.asp?newsid=363

Action for M.E. funds two pilot research projects…

The trustees of Action for M.E. are delighted to announce that they have selected two pilot research projects for funding: firstly, a feasibility study which will result in a high-quality proposal for a post-mortem tissue bank for the systematic study of M.E./CFS and secondly, the establishment of a National Outcomes Database which will combine the data from 46 clinical teams in England, providing the infrastructure needed for large scale biomedical and treatment studies eg. genetic studies in CFS/M.E. A total of just under £80,000 has been awarded.

http://www.afme.org.uk/news.asp?newsid=369

Grieving For The Loss Of The Person You Once Knew — While Learning To Be The Person You Have Become – by Catherine Morgan

There comes a time in every fight, where you have to wonder what it is you are fighting for. In the case of chronic illness, I thought I was fighting to take my life back. I thought I was fighting to find a cure for myself. I thought I was fighting for the right combination of medications to help me lead a “normal” life again. I was fighting, fighting, fighting…..until that one day when I realized, I was fighting a losing battle.

http://livingwithcfs.wordpress.com/2007/03/07/one-lesson-from-a-decade-of-fighting-chronic-illness-chronic-fatigue-syndrome-cfs-fm/

I found a link to this today. I cannot comment on the tool’s validity, but it might be of interest.

To see if there are any drug-food or drug-drug interactions associated with any medication, please follow three simple steps

http://www.healthatoz.com/healthatoz/Atoz/drugdb/drugSearch.jsp

The Department for Work and Pensions (DWP) held a consultation forum in London.

The forum discussed the proposals in the Welfare Green Paper, No one written off: reforming welfare to reward responsibility,  as part of the Government’s formal consultation process.

http://www.afme.org.uk/news.asp?newsid=373

DWP Minister to attend next APPG

The Rt Hon James Purnell MP, Secretary of State for Work and Pensions, has agreed to address the next APPG on M.E., about the Welfare Reform Green Paper, No one written off: reforming welfare to reward responsibility.

http://www.afme.org.uk/news.asp?newsid=372

The next meeting of the Cross Party Group on M.E. will take place in the Scottish Parliament on Wednesday 17 September at 1pm in Committee Room 3.

http://www.afme.org.uk/news.asp?newsid=371

Fatigue syndrome funding and therapy
More funding is needed for CFS/ME research

Sir, We can assure Hilary Patten (letter, September 10)  that biomedical research into chronic fatigue syndrome (CFS)/ME is taking place in the UK, funded by the CFS Research Foundation.

http://www.meassociation.org.uk/content/view/657/70/

Meeting to be held 3-5pm, Wednesday 8 October
Committee Room 18, House of Commons.

1.    Welcome by the Chairman

2.    Main speaker: The Rt Hon James Purnell MP, Secretary of State for Work and Pensions, will address the APPG about the Welfare Reform Green Paper, No one written off: reforming welfare to reward responsibility.

3.    Questions to the Minister

4.    Minutes of the last meeting

5.    Matters arising

i.      Child protection
ii.     Countess of Mar’s meeting with charities
iii.    APPG enquiry into NHS service provision
iv.    M.E. Services -  A template for a UK-wide module
Presentation by Di Newman, Co-ordinator M.E. Society (Peterborough M.E. & CFS Self-Help Group)
v.    Mental Health Act and Mental Capacity Bill – Implications and M.E.
Presentation by Di Newman (as above)

6.         Any Other Business

7.        Date of Next Meeting

http://www.meassociation.org.uk/content/view/654/70/

More than a third of patients with long-term fatigue conditions like Myalgic Encephalomyelitis (ME) believe complementary and alternative medicines (CAMs) are more effective than traditional medicine in treating their illness, research launched at the British Pharmaceutical Conference (BPC) in Manchester reveals.

http://www.medicalnewstoday.com/articles/120639.php

As the government fights to prove that it understands the hardship faced by the most vulnerable people in society, a national survey published this week shows that many people who are severely affected by Myalgic Encephalomyelitis/ Encephalopathy (M.E.), have to struggle through the appeals system before they are awarded Disability Living Allowance (DLA).

http://www.afme.org.uk/news.asp?newsid=356

The report of the scoping exercise of M.E. in Scotland, which Action for M.E. undertook on behalf of the Scottish Government, is now available online.

http://www.afme.org.uk/news.asp?newsid=348

Sometimes it’s hard to know what to say to someone with an invisible illness, such as fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS).

http://chronicfatigue.about.com/b/2008/09/11/things-people-with-invisible-illness-do-want-to-hear.htm

Certain phrases really annoy a lot of us with chronic illnesses such as fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS). While they’re usually said with the best of intentions, we hear them so often and they reflect such a lack of true understanding that they’re like fingernails on a chalk board.

http://chronicfatigue.about.com/b/2008/09/09/things-people-with-invisible-illness-dont-want-to-hear.htm

When you first meet someone with fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS) you likely have no idea that person is sick. Same goes for people with arthritis, multiple sclerosis, diabetes, heart disease, cancer, eating disorders, depression, endometriosis, diverticulitis … the list goes on and on.

http://chronicfatigue.about.com/b/2008/09/07/invisible-illness-awareness-what-is-an-invisible-illness.htm

Health reporter Jane Elliott has written an interesting story on the BBC News website today about the creation of a new prototype wheelchair – with wheels that fold in on themselves, making it easier to transport the wheelchair when it’s not in use.

http://news.bbc.co.uk/1/hi/health/7475609.stm

The chairman of the Worcestershire ME Support Group Ian Logan has called for more funding for research into the debilitating illness.
It comes just days after the inquest into the death of Bromsgrove ME sufferer Nicola McNougher who travelled to Switzerland to take her own life, using the country’s legal ‘assisted suicide’ system, after the condition got too much for her.

http://www.meassociation.org.uk/content/view/644/70/

A BARNT Green woman travelled to Switzerland to end her own life using the assisted suicide method which is legal over there, an inquest heard.
Nicola Caroline McNougher, 43, was diagnosed with Myalgic Encephalopathy (ME) after suffering a number of other debilitating illnesses which caused her severe and chronic pain, said Worcestershire Coroner Geraint Williams.

http://www.meassociation.org.uk/content/view/643/70/