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Paul (email address
supplied) |
30 December 2005 10:05
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I fell ill in December 2004 when I had a nasty flu, along
with a head injury by an assault in January. I had to leave my job as I could
not even lift a pen without it feeling like iron, and spent 4 months in bed, as
walking felt like hell on earth. the housing association tried to evict me for
non payment of rent as I was too unwell to go to the council offices. I had to
go from a to b to c to get it paid.
I have had 3 doctors, the first 2 said I have deep rooted problems so I changed
doctors and got diagnosed by my third. I was desperate for a transfer as living
on a ground floor flat surrounded by lunatics made my life a living hell. my
housing association ignored this and wanted my arrears to go down. my mum lent
me £1000 to clear them as I was bed bound.
this illness takes your power to fight back and leaves you feeling unbearably
isolated and angry and just plain awful as I am in a body of a 100 year old,
made worse by the medical professions apathy. I would not put anyone through any
of this. Research is the answer and its absolutely disgusting that nothing is
happening, as more lives, including my own are at a standstill. How can u have a
diagnostic marker with no research to find it! mind boggling.
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Flora McKenzie |
28 November 2005 19:21
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I have just looked on the ME and my MP campaign info and am saddened to
see just how many MPs haven't been contacted.
It takes only a very few seconds to print out the draft letter on this site
,amend as you wish and post ...is that too much to ask ???
We all spend so much time doing things that have no real importance to anyone
..watching TV for instance, surely knowing this letter could make a huge
difference to the future of all M.E sufferers it should be worth just 5 minutes
of everyone's time and a first class stamp to join the campaign ,send the letter
and raise awareness.
We all need to pull in the same direction to win this one so come on folks show
some festive spirit and get posting.
Please can everyone spare just 5 mins of their time to contact their MP. A
draft letter is available on site. Come on everyone please...for the sake of a
few mins and a first class stamp your letter could make a huge difference to the
future of all sufferers.
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Flora McKenzie |
19 November 2005 12:37
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Opathy v Myelitis
Well done, folks, for spelling this out in plain English.
I, personally, have been utterly disgusted with some groups who have taken on
the opathy title.
It is not a fair description of the illness, isn't a safe description and can
only lead one to think such groups are in favour of supporting the psychiatric
lobby where M.E is concerned, however much they try to tell us different.
I also think the title CFS should not be linked with ME ..they are two entirely
different things and doesn't help one iota with getting the real M.E recognised.
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Caroline Walker |
18 November 2005 11:03
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Dear IIME,
The DoH must fully endorse the Who classification of M.E. and adopt the Canadian
Guidelines to ensure that all GPs work to the neurological definition. Recently
I read an online newspaper article about one patient hiding her mental illness
by asking her GP to write either nervous disability or Chronic Fatigue Syndrome
on her sick line. According to this patient, this is not unusual! I have written
to Mr. Andy Kerr, MSP Health Minister, pointing out the great harm that this
does to M.E. patients in terms of clinical trials and any subsequent treatments.
How many clinical trial participants are masquerading as true M.E. patients
simply because doctors still equate M.E. with mental illness?
Yours sincerely
Caroline Walker.
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Gill Jackson |
13 November 2005 11:44
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Have suffered with M.E. for 20 years. Was diagnosed by Professor Findley
of the Royal Neurological Hospital in London. Moved to Hampshire as better quality
air and then decided to start my own group which has been running for ten years
thanks to generous support from local companies. My group is solely for
supporting M.E. sufferers and their partners and family. Look forward to any
comment and feedback
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Belinda Lavender |
10 November 2005 17:48
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It's great to see that you are campaigning for research into M.E., I am
fed up with being told that it's all in my head when I know it's not.
A brilliant website with so much going on, I will definitely be logging on
regularly and hope to join in as much as possible
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Lynn Cox |
31 October 2005 14:06:18
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My daughter, Jessi, has just been diagnosed, but after
reading the personal stories on this site it looks like we have caught it early.
Was just wondering if anyone has managed to get DLA, as I have been told that I
should apply. Will be going to Sparsholt on 14th so will meet with some of you
there and find out more I'm s
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Angie |
18 October 2005 15:53:51
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We are so near... to getting positive proof that ME is
in the genes not in the mind. caused by dysfunctional aspects of family lives as
stated by Chalder.. outrageous diabolically outrageous... Angie
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Leanna
Stratford |
19 October 2005 21:03:39 |
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Hi again
just read
Fiona's comment and would just like to say I agree with her about the DLA part. I
have tried to claim 4 times for DLA for my M.E as my doctor told me that unless
I could definitely say I was on some sort of recovery there was no point in me
returning to work only to be told each time that I am not disabled enough even
though the M.E is a disability!!! we cant win maybe we should take it to downing
street!!.
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Leanna
Stratford |
19 October 2005 20:59:18 |
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hi
I have been suffering with M.E for about 2 years now and
have felt totally alone this whole time. I am a single mum of 33 but most days
feel 93 it was such a relief to see your article in the evening news on Monday
and so nice to know there are people out there who want to help us. I have just
been told of a doctor at Southampton who is researching M.E apparently still
trying to get an appointment with her! Most days I too feel like I could just
sleep all day but having 2 children doesn't make that easy!! well take care will
visit this site as often as poss. thank you.
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Adela Cox |
18 October 2005 15:53:51
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A very informative and helpful website. I have
suffered from M.E. for nearly 7 years and it is somewhat comforting to read
about so many people who are going through the same thing as me.
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Flora McKenzie |
15 October 2005 20:33:11
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Going from strength to strength Sue.. congratulations
on success of yesterday ..have a cuppa day ..and thanks also to Richard, Pia ,and
Katherine for assisting you and your family with the site. Wish I could do more
,as you know I support you 100%
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Fiona McCulloch |
5 October 2005 20:38:01
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Fabulous - got this site link from Co-Cure who email me
daily. I am I guess a fairly new ME sufferer and am keen to be kept up to date
on what is happening. As I am already finding out with the medical profession
knowing very little to nothing about it, there is very little help and support
available, including the difficulties people face within the benefit section
when become too ill to keep going to work, and how hard it is for sufferers to
gain access to benefits like DLA. I am a keen supporter of any ME website and
would be grateful if I could be kept up to date on any news and hear views from
other sufferers too - a web-based support group also feels like a good way of
giving each other support through difficult times. Well done, keep up the good
work.
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Jane Colby |
5 October 2005 00:43:09
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Many congratulations on your initiative. It is 20 years since
I myself was hit with ME due to a virus related to poliomyelitis. I became
bedridden and then wheelchair-bound. I have spent many years campaigning,
writing on ME and now also running The Young ME Sufferers Trust (www.tymestrust.org)
for young people up to the age of 26. I wish you every success in your venture.
Severe ME is a serious disabling illness, as I know only too well.
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Lorna Gough |
30 August 2005 22:34:45
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I have just listened to your broadcast. I thought you answered
all the questions really well, you were able to make your points calmly and
confidently without criticising the other callers, even when they had different
views to you. well done
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Susan Eason |
26 August 2005 22:18:59 |
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I just listened to the broadcast Sue. Well done you put your
points very well done.
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Wendy Pawsey |
25 August 2005 18:31:43 |
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A clear and informative site. I shall be a frequent visitor.
Well done.
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Flora Ian Samantha |
20 August 2005 11:27:44 |
Fabulous..... a site that gives the facts as they REALLY are
,with no hidden agendas.
A much needed first class FACTUAL M.E site.
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Maureen, Janet and David |
15 August 2005 16:02:41: |
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Good work.
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