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Disabled given more cash to adapt homes

17/1/2008

 
The following is a report in the Worcester News re Worcester City Council (contact info is included) -
if you need help, and you don't live in the City of Worcester, could be worth asking what is available in your area.
  Disabled given more cash to adapt homes By Lucy Tatchell   MORE disabled people in Worcester will be able to adapt their homes thanks to extra Government funding.
Worcester City Council has received an extra £23,000 towards its disabled facilities grant which funds home adaptations to help disabled people live independently. It takes the city's funding total for 2007-2008 to £188,000. The money must be spent by the end of March 2008. Kate Bailey, principal strategic housing officer for the council, said the extra money will mean the council can help six or seven more people in Worcester in the next couple of months. She said: "The money means we will be able to do some more work. The money is what we asked for so it is great news to get it." Last year, the grant helped 60 disabled people in Worcester make adaptations to their homes which will allow them to live independently. The most common adaptations included improving access by widening doorways or building ramps, and installing downstairs bathrooms and stairlifts. Anyone wishing to find out more about the grants should speak to their occupational therapist or general practitioner, or call Ms Williams at strategic housing services in Worcester on 01905 721127.
4:33pm Wednesday 16th January 2008
http://www.worcesternews.co.uk/news/wnnewslatest/display.var.1970317.0.disabled_given_more_cash_to_adapt_homes.php

Blood donation and ME/CFS/PVFS (UK)

15/1/2008

 
--- In IMEGA-e@yahoogroups.com, "Charles Shepherd"
<charles.c.shepherd@...> wrote:

INFORMATION MAY BE REPOSTED

From time to time The ME Association is asked if people with ME/CFS
can donate their blood.

The current advice from the UK National Blood Service (NBS), which
has been re-checked today, is that:

'You may give blood when you feel you are completely recovered and
have no further symptoms and no treatment is required'

This NBS advice specifically applies to people with PVFS.

An NBS adviser has confirmed that this advice also applies to people
with ME and CFS.

The NBS can be contacted on: 0845 7711 711 (UK).  Website:
www.blood.co.uk


We would be interested to hear from ME/CFS contacts overseas
regarding the blood donation situation in other countries.  We will
summarise this information in a further internet posting.


Dr Charles Shepherd
Hon Medical Adviser, ME Association
15 January 2008

MEA website: http://www.meassociation.org.uk
MEA contact email: meconnect@...

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

--- End forwarded message ---

MEA joins Medicines and Healthcare products Regulatory Agency Panel

15/1/2008

 
--- In LocalME@yahoogroups.com, "Charles Shepherd"
<charles.c.shepherd@...> wrote:

MAY BE REPOSTED

The ME Association has joined a new panel being set up by the
Medicines and Healthcare products Regulatory Agency (MHRA) - the UK
government body that monitors adverse reactions to drugs and
healthcare devices.

This will enable us to liase more closely with the MHRA on unproven
claims and adverse reactions relating to various treatments that may
be promoted or given to people with ME/CFS.

It also means that we can provide our members with a more rapid and
effective service when relevant adverse reactions need to be brought
to the attention of people with ME/CFS.


Dr Charles Shepherd
Hon Medical Adviser, ME Association

MEA website: http://www.meassociation.org.uk



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

--- End forwarded message ---

Carers of people with ME, CFS, and FMS

10/1/2008

 
BBC Radio 4 is running a series on Care in the UK see: http://www.bbc.co.uk/radio4/youandyours/careintheuk/index.shtml

Have you anything you would like to add to:
Radio 4 message boards > Care in the UK > Carers of people with ME, CFS, and FMS
at:
http://www.bbc.co.uk/dna/mbradio4/F9042615?thread=4963712     Radio 4 message boards > Care in the UK > Welcome to Care in the UK
Welcome to the Care in the UK message board. Throughout January, You and Yours, along with Woman’s Hour, will be examining social care – the care of elderly and disabled people – which has been described as one of the biggest unresolved issues of our time. As more of us live longer we're starting to realise that longevity comes at a price. It has been compared in scale with the pensions crisis.

On Monday January 7th at midday You and Yours will be launching the Care in the UK season with a special programme. We’ll be talking to the key figures including the minister Ivan Lewis, Niall Dickson of the King’s Fund thinktank and social services spokesperson John Dixon.

On January 14th we will be unveilling a Care Calculator on this website and a questionnaire which will help you to contribute your thoughts to the national debate surrounding how social care is provided and funded.

During the month we will be looking at many different aspects of social care including the history of care, alternatives to the conventional residential care home, how other countries organise their social care and how care businesses have changed over the last 20 years.

You will also be able to hear Tony Robinson and actress Laura Linney talk about their own experiences of social care.

On this message board you will be able to discuss the issues you hear on the programmes. Feel free to share your feelings, offer support and describe your experiences.
Victoria, You and Yours Team
   

Jill Pigott 
Patient/Carer Representative 
Worcestershire M.E. Support Group

All Party Parliamentary Group on ME (APPG) on 22 January

8/1/2008

 
Information required for All Party Parliamentary Group on ME (APPG) on 22 January.   Please can you help   I am collating information given on page two of the membership questionnaires for the current year.  
There maybe a few people I will contact direct if I have specific questions following on from their replies, but in the meantime, if you have seen Dr Mark Roberts and have (or have not) been referred to the Local Multi-Disciplinary Team (LMDT), and feel there is anything you would like to add either about your appointment with Dr Roberts or the LMDT - please let me know. (Names are not included on the collated information)   The following describes the type of info required:   Permission to Repost   Following are extracts from messages received from Charles, on IMEGA-E
(he has given permission to repost)   "It would be very helpful if anyone … … … could let the MEA know if any significant changes have taken place, or are due to take place, with regard to existing NHS services provided by the 13 CNCCs (Clinical Network Co-ordinating Centres) and their LMDTs (Local Multi-Disciplinary Teams) - especially closures or cut-backs that have not already been discussed by the APPG.
We can then raise these as specific issues with Ann Keen at the APPG meeting on January 22.   It's most important that we get to know of any concerns re CNCCs and LMDTs that are not already on record.   A similar request for info will be going out in January ME Essential. The MEA wants to receive all types of feedback about current and proposed NHS hospital based services for people with ME/CFS.   This can include: positive experiences;
negative experiences;
concerns;
information about closures or cutbacks etc etc.   We are quite happy for this request to be reposted as widely as possible."     Renewal of your membership helps the Group help people with ME/CFS/FMS.  If you have been meaning to complete the form, but not got round to doing so, - please send it to Bob soon.  His address is on page 2.    

Jill Pigott 
Patient/Carer Representative 
Worcestershire M.E. Support Group

More potential dangers of the UK NICE Guideline on "CFS/ME" M. Williams

4/1/2008

 
--- In LocalME@yahoogroups.com, "renethorpe" <renethorpe@...> wrote:

Permission to Repost

http://www.meaction uk.org.uk/ Dangers_of_ NICE_for_ MECFS.htm

More potential dangers of the UK NICE Guideline on "CFS/ME" for
people with ME/CFS?

Margaret Williams 2nd January 2008

Much has been written about the NICE Guideline on "CFS/ME" since its
release on 22nd August 2007, mostly noting concern over the
Guideline's recommendations that cognitive behavioural therapy and
graded exercise therapy (CBT/GET) should the first-line (and only)
management for "Chronic Fatigue Syndrome / Myalgic
Encephalomyelitis"
or "CFS/ME". This concern is unsurprising, given the existence of
numerous published papers which all conclude that CBT is of limited
and non-lasting benefit, and given that at least four major surveys
of over 3,200 patients with ME/CFS have clearly shown GET to be
actively harmful.

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