12th MAY M.E. AWARENESS DAY - PRESENTATIONS TO 10 DOWNING STREET:

12th MAY M.E. AWARENESS DAY - PRESENTATIONS TO 10 DOWNING STREET:

* On arrival into London and making my way by mobility scooter along
Charing
Cross Road down through Whitehall, it was clear the glorious weather had
brought out millions of tourist on to the streets of London..!
Virtually the whole
of Whitehall had security barriers both sides of the road, media cameras
and armed police everywhere (sure! the presentations were important
- hadn't realised just how much though! :)

* Due to the nature of M.E. and last minute transport problems - it was
clear
the 'Presentation Group' would be small - reduced from an original list
of eight
to three:Victoria, Apolonia and myself!

* However, Gordon Brown MP at 10 Downing Street and Ann Keen (MP)
Under Secretary of State for Health at the Department of Health,
Richmond House
were sufficiently informed of the real need for Research into M.E. and,
of the
ongoing
plight of those affected by Myalgic Encephalomyelitis (M.E.) including
their families,
friends and carers with the following presentations:

1. MP letter, and information on behalf of those affected by Severe M.E.
on
behalf of the 25% M.E. Group for People with severe M.E.

2. Covering Letter to both Gordon Brown and Ann Keen, by
Di Newman

3. Letter and information from BRAME to Gordon Brown and Ann Keen
on behalf of Tanya and Christine Harrison

4. Factsheets and information by The Young M.E. Sufferers Trust, Tymes
Trust
by a mother whose daughter has severe M.E.

5. M.E. and the Implications of the Mental Health and Mental Capacity Acts,
by Di Newman

6. A selection of research studies into M.E. by MERUK (M.E. Research UK)
including
several 'Breakthrough' magazines and factsheets ('Response to Exercise'
and 'The NICE Guidelines - What's the problem?' re. M.E.)

7. Letters regarding the Royal Society of Medicine (RSM) Conference
on 'Chronic Fatigue Syndrome: Dr Scadding letter (21st April 08), David
Kemp CO
-CURE Digest, 'Details of One Recent + Three Forthcoming Conference on
M.E./CFS', RSM Protest letter from Joan Crawford, on behald of Doris
Jones

8. Letter on behalf of 'Miss Z' who has severe M.E. detained under Section
3 of
the Mental Health Act on 9th April 2008

9. Dr Terry Mitchell and Dr Anne Gerkin 2007 powerpoint presentation on
Myalgic
Encephalomyelitis (M.E.) to the Peterborough M.E. & CFS Society Self
Help
Group

* Following the presentations, we sought shade under a huge oak tree in
nearby
St. James Park for a picnic. Many topics affecting the M.E. Community
were discussed:

disbelief, denial, ignorance, destitution, loneliness, isolation,
destroyed relationships:
partners, families, friendships and careers, benefits cuts/delays: being
unable to 'prove' the extent of the illness to warrant appropriate benefits,
equipment and assistance etc etc.

* And how, despite huge hurdles, elephant traps and pitfalls - someone with
M.E., still manage somehow to 'salvage' something from their previous
'life' (pre-M.E.) through poetry, card-making, photography, art, prayer,
etc.

15th MAY M.E./CFS OPEN FORUM - HOUSE OF COMMONS:

* The journey across London was much the same as the 12th May, although it
poured of
rain the whole day... After stopping in Trafalgar Sq for some soup I
made my way
to Victoria Tower Garden's - adjacent to the Houses of Parliament.

* Along with the very few people hurrying along with wind-blown umbrella,
I
decided to make my way to the NCP and meet those coming in by car to
attend the 15th May event in House of Commons. With wind-blown
umbrellas'
- we made our way towards the entrance of Parliament.

* Once through the 'new' security building we aimed for the 'new'
restaurant
to dry out/warm up and soon met Polonia and Victoria there! Once
refreshed
we started approaching Committee Room Six and met Annette Barclay.

* Six, in all had arrived for the M.E./CFS Open Forum: Apolonia, Victoria,
Hugh,
Annette, Ciaran and myself - and despite most of us requesting our MPs
to
join the meeting - not one arrived! And rather than have to queue for
the
'Green Card' system (where one can summon their MP to meet with them)
- especially following a long and rain-soaked journey... We commenced
with the
agenda in hand and would welcome any MP, should they arrive and join
us...

* Each agenda item was fully covered and a CD recording for clarity
of the business was undertaken. A summary account of the meeting
will
be available in due course.

a. A brief letter from Trevor Wainwright, Event Patron and, Christine and
Tanya Harrision from BRAME, who were unable to attend to the events due
to pressure of other commitments, were read out at the meeting.

b. The main points discussed were:
(i) Mental Health & Mental Capacity Acts
(ii) Recent Guidelines on M.E./CFS: (NICE, NHS-Plus, DWP)
(iii) UK M.E./CFS Clinics & Services & Funding
(iv) RSM Conference
(v) National M.E./CFS Charity Representation

c. A number of other significant issues were raised under 'AOB' and
will be covered in the minutes of the meeting which will be available
in the near
future.

The 2009 12th May M.E. Peoples Day Event will be taking place on Tuesday
12th May.

With kind regards

Di Newman
Event Organiser
po Box 775
Peterborough
Cambridgeshire
PE1 4WZ
01733 552872
07742 615 952
12MayM.E.PeoplesDay _Events@live. co.uk