Guestbook Gallery 2006
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20 November 2006 23:26
A huge thank you to you !
At last a group that seems to be telling it as it really is, and able to bring
the right people together so that we can change how this horrible illness is
treated & perceived.
I can't do much to help, housebound most of the time. But will gladly subscribe
& support any way I can.
A voice of sanity in the mess of ME politics.
28 October 2006 21:55
You are doing a great job, I wish there were more like you out
there. The work you are doing to fight for proper research into ME is greatly
appreciated, I am sure by many ME sufferers, and definitely by me, please keep
up the good work.
26 October 2006 19:10
My daughter has had M.E./CFS/Fibromyalgia syndrome for half her
life now. i.e. from age 13-26. It is the cruellest thing I have ever known.
16 October 2006 17:18
One of the many things that concerns me about
these guidelines (the NICE
guidelines) is that health staff will be lead to believe that ME patients
have made ourselves ill due to faulty thinking and that getting better is simply
a matter of changing ones attitude.
Therefore when CBT and GET inevitably does not cure a patient with ME, what will
Will psychiatrists put up their hands and blame their flawed research trials?
Never. They will play the psychiatrist's version of the blame game and blame it
on the patient.
No doubt we will then be given another psychiatric label such as "difficult
What type of treatment will these psychiatrists come up with then? Will we be
locked up like the late Miss Sophia Mirza?
01 October 2006 20:42
It was so sad to read of Sophias death, you would think it was
1906 not 2006. Glad that the doctors involved are being reported to the GMC,
think all the 25% long term would probably have a case against them.
23 September 2006 12:10
After recently viewing the brilliant
Meridian news bulletins on 'Sophia's Story'
and the 'Severe ME' expose I wanted to thank you for bringing this awful disease
to people's attention. If only more news channels would follow. On both
articles, a promise of a cure was made within a year- five years and the
possible use of Interferon Beta as a treatment. How far away are we from this
possible life saver and where can I read more about the progress and see what is
needed for this essential research to continue?
Many thanks for your dedication and much love to Lauren from a fellow young
16 August 2006 01:00
I admire your work! Please keep on going!!!
I really hope there is going to be a change in mentality to take CFS very
serious and that this will lead to better and more research (for example larger
research groups - in cancer they speak about research groups of thousand people
and more!, more money for research programmes, ...)
I am a 41 year old women and got CFS when I was 29.I live in Belgium (so please
excuse my writing faults because English is not my original language).
Here in Belgium, it is all the same. The psychiatrists - the alternative doctors
that in fact just want to fill their pockets and don't do any research, just
playing with your hope to get better - the 'official' doctors that offer
cognitive behaviour therapy and graded exercise and magnesium or antibiotics or
gamma-globulin, ...But in fact, just like the others, I still want to see their
research and results on large test groups, their statistics...before they are
saying something helps to sick people.
Although I was quit young when I got sick (29 years) I think often about the
children with CFS. It is so hard to lie almost continually in bed, to have
almost no life, ... but at least I had 29 years. What about the children? What
about their personality and development????
Because I am already so long so ill and it is just getting worse, I don't think
I am going to survive until they find someday (for example in 20 years) a medication
to really treat CFS. Medicine does not go that fast and research also not. That
is how I see it. But at least, we can fight for the children!! And the ones that
come after us! So that they don't need to go through all this...
with high respect,
15 August 2006 22:46
My name is Karen, live in Oregon and have been poisoned by
pesticides and herbicides for 19 yrs but believe it has been all my and everyone
I can only type short memo as using library computer and I get
sick here. I read Sophia Mirza's story and cried and still cry. I can't remember
all that I have gained in knowledge of chemical injury over past 19 yrs but I
sure do remember personal pain I have had and have now 24 hours a day...with
myalgic enceph(chronic fatigue), fibromyalgia, toxic encephalopathy, and all the
hundreds of other symptoms of vaccine and pesticide poisoning.
I want to tell Sophia's mother Ms. Criona Wilson, that my
heart and soul go out to you and to your beautiful daughter Sophia and I will
never forget her story...sadly there are millions of similar stories, but I am
so outraged every time I read or talk to or hear of another chemically injured
human being told it's in their head, they are hypochondriacs (how many times was
I told that growing up), I cannot believe in the year 2000 to now, this is still
denied and told we are mental...do you know why they do this I know you know
now...I have read lots of what I believe to be very true, gotten on freedom of
information....by other researchers (I am too sick to do much research myself
but my ears and eyes are always open), that the United States and Britain and
Canada have since the 40's, experimented on their people, us, children and
adults alike, via vaccines, or by air, with not only toxic chemicals but toxic
bacteria. I know now why we are so sick, and it was intentionally done to all of
us...to keep us weak and sick and getting the pharmaceutical and medical
industries rich. I cannot believe another human being does this to another human
being...I cannot verbalize my emotions due to neurological damage due to
pesticide poisoning so what I said here might have to do, I hope I conveyed what
I feel to you.
I will write again when I feel better. God bless you Ms.
Wilson and all the other ME Sufferers and their families, may someday we all get
some peace and no more pain.
14 August 2006 05:12
I have just spent a few hours on this wonderful site, and was
especially interested in the Canadian Criteria, including the recent addition to
As a mother of an 18 year old son, who was diagnosed with ME 5 years ago, I am
interested in finding out as much as I can on ME
Prior to this diagnosis my son was a fit, intelligent & fun-loving teenager.
Then he had surgery - an emergency appendectomy, and he vomited under
anaesthetic, was aspirated and stayed on oxygen for 12 hours. His recovery from
that surgery was slow, and 8 months later came the ME diagnosis. He had also
suffered from regular bouts of tonsillitis prior to the surgery.
It is my belief that the surgery, and its problems, contributed to the onset of
24 June 2006 05:06
I live in the UAE, am now a senior citizen and have had ME since
As there is no support group here and also no doctors who have knowledge of this
disease I have learnt ways to lessen the symptoms by trail and error.
So far I am doing okay and still manage to live independently.
People here have been most kind and caring even though they do not understand
what is wrong with me, so I feel truly blessed.
22 June 2006 19:41
-just wanted to thank you so much
for organising the conference. I am too ill to go to things like this but have
been reading some great feedback. Let's hope that this is the beginning of the
right sort of research, respect & recognition that we all deserve.
18 May 2006 11:33
This is the first time I have found your site and I'm very
impressed. You have up to date information on research and your web site is easy
Can you tell me if it is possible to take part in any on-going or forthcoming
Or how do I find out about them?
I have been virtually housebound for the last five years and have suffered with
M.E. for nearly 9 years.
18 March 2006 11:33
A friend sent me a CD with a download of a radio
interview with Invest in ME, and I thought it was really fantastic.
Most people I
know now realise that there is a definite cover up going on wrt ME, yet we can't
seem to get the media to stop their snide remarks that they have been making
over the years. But perhaps we are beginning to break through.
is an epidemic now, so journalists themselves will tend to know of someone with
it, and that it is real. But the real barrier seems to be the NHS itself, and
the MRC, and thus the establishment.
And the charities haven't done enough in
the last 20 years.
The main ME charities seem to have been sitting on the fence in accepting that
the psychosocial models for the illness have some relevance. We should have been
able to ask with a strong voice for decent neurological and immunological tests,
but somewhere this call for appropriate medical intervention has been
The time has gone now for using polite words
and being patient.
Those who have assumed medical or political
positions of responsibility must act now, if only to resign as publicly as
possible while stating that they can no longer preside over the most
spectacular cover up of the last century of medicine.
Palliative care is not good enough, and does
not stop the progress of the illness. Increasing numbers of PWME in our
population, and the high incidence in families as well as in certain areas
of the country, point to a disease that is communicable. In disregarding
these signs, those responsible for the health of our whole population are
guilty of what in history will be seen as criminal negligence.
After the BSE crisis, the whole structure of MAFF was disbanded and changed to DEFRA. Something like that must have to
happen in the Public Health Agency and the MRC when the truth comes out.
This will be seen as a significant crisis, and will need to be done in a
controlled way. Let's hope that our top civil servants are up to it.
(Deborah's real name has been provided)
11 March 2006 18:20
This is an excellent campaigning website - keep the pressure
Every day either on the television news or in the newspapers I hear of or read
about government money being wasted on nonsense schemes or being misspent -
money that could make a huge difference to biomedical research into and
treatment for ME
Sadly the impression I get is that the ME organisations that the government
works with have conceded ground on the psychological debate that has done a lot
of harm to the need for biomedical research. It eases the frustration somewhat
to know that this campaign exists and may get the breakthrough we so badly need!
08 March 2006 12:31
I'd give you an interesting update about what's been going on when I've visited
the local ME centre.
Last time I was at the centre the doctor was concerned about my heart rate, and
thought I may have an underlying condition. He referred me back to my GP, and
wrote a letter to ask the GP do some tests to rule out any heart condition. He
said I would be seen again in three months for treatment for ME.
I went back to my GP, and he booked me in for a resting ECG, with a nurse
(although I use that term loosely, as she didn't seem to know what she was
doing!) from the practice. As you may know a resting ECG (especially with no
input from a cardiologist) is prone to missing most heart conditions, and only
lasts less than a minute. The ECG, as you can imagine, came back fine. I should
mention that I am glad that nothing has shown up, as I don't need anything to
add to my problems. However, the lack of proper investigation has shown the
level of interest my GP has in my health!
I have been back to the ME centre now, and looked forward to some treatment for
my ME. The doctor checked my heart again, and listened to my updated
condition. He then offered me some treatments, saying:
'...we take a pragmatic approach to treatments...and offer three...'
I decided to list the treatments for him, and said I wanted something that would
actually work, or at least not make me any worse. As you know the centres offer
CBT, GET, and adaptive pacing. This is due to the centre working in conjunction
with St.Barts hospital in London; being involved in the PACE and FINE trials.
The doctor tried to extol the virtues of GET, at which point I pointed out that
he was concerned about my heart rate, and yet he was asking me to increase it
through exercise! As you know, there have been many reports, and surveys that
point out GET most likely will make ME worse. He did mention that he didn't
think I was suitable for psychological treatments, which I thought was a given
for anyone suffering with ME.
Now for the interesting bit...I asked the doctor to see if he could get me
involved in the trials that Dr. Kerr will be undertaking. I imagine that he will
need guinea pigs for his genetic research, and people to test his treatments
on. The doctor (from the centre) has promised to speak to his boss (Dr.White at
St.Barts) to find out if this will be an option. He will be telephoning me in a
couple of weeks to let me know the outcome.
I did ask the doctor if there was any possibility of seeing a Homeopath,
Naturopath, Aromatherapist, Osteopath, Herbalist, or anyone else who could
possibly treat my ME. He said that this wouldn't be an option on the NHS.
is an interesting juxtaposition.
It is common knowledge that CBT and GET are
not treatments for ME, and that people with ME learn pacing on their own (pacing
is more of a survival technique than a treatment). There is no possibility of
receiving any treatments that may do some good (probably because they are
natural treatments, and are shunned by the health authorities), and so where
does this leave me? I refuse to be subjected to treatments that will make me
worse, and I am refused treatments that may ease my symptoms.
So the situation is this:
I am (and have been) faced with a GP who is not interested in my health, and
is rude and condescending. I have not received proper tests to determine my
condition, and any additional complications. I have waited for over a year to
be treated, and the only things I have been offered have been proven to be
detrimental to my health. I have never been given any support or help by the
medical profession, and have had to do their jobs for them; in finding out what
I may have, and researching ME and possible treatments. I am left hoping that I
may be able to be a test subject for a treatment (funded through charity, and
nothing to do with the NHS) that I am so desperate for, I am willing to try
anything that may work. If I cannot become involved with any trials that may
occur, I am at a loss to know where to turn next. It is clear that hundreds of
thousands of people are in the same situation as me, faced with no hope, no
help, and uninterested medical professionals (I use the term loosely). It is
also abundantly clear that the government has no interest in the people they are
supposed to serve.
This is a telling lesson for anyone who thinks that their health is important to
anyone but themselves, and that no matter what you do or if you try, no one
All the best
Douglas (Douglas' real name has been provided)
6 March 2006 15:58
Thank you for the great work!
01 March 2006 22:04
I had great hopes when I first heard about the Gibson Inquiry -
At long last I thought, a parliamentary forum where the untainted truth about ME
could be brought into the open without the vested interests which have
previously been able to exert such a stranglehold on the illness being able to
compromise it. Perhaps this was somewhat naive. No other illness and no other
group of suffers is as villified and mistreated as those who suffer from ME. For
those who suffer from this illness this is their cancer. For many they will go
on to suffer long after someone who develops cancer gets the all clear. The
general public would be appalled if they thought that cancer patients were being
denied appropriate treatment to enable them to recover. Why is the same message
not getting through to the general public about ME. Why are 250,000 people in
this country consigned to the margins of society, and relegated to an economic
dustbin because they have this illness? Why can the government not take its
blinkers off and see that there of those 250,000 people a good proportion of
them will have worked for many years, and paid their taxes and national
insurance in the expectation that when their time of need came they would be
helped. Why is it acceptable that when that time comes, they are either offered
no treatment at all or a treatment which is inappropriate? Malcolm Hooper is
doing sterling work in this area. I for one will be eternally grateful for
whatever he can achieve. He consistently puts the accurate scientific case up to
those in authority and rebuts the psychological argument every time.
Re the DWP and the Green Paper on benefit changes, every sufferer with this
illness should be advised to send a letter to the DWP Secretary of State
pointing out that if the Government wants people to go back to work and be able
to compete with healthy people in the jobs market, it must first make
appropriate medical treatment available for people with ME.
28 February 2006 19:21
Thanks to all of you for doing this. Your all so great!!!
12 February 2006 20:17
Invest In ME is just what the M.E. World have been waiting for -
and greatly needing for so long.
All best wishes to you all and thanks on behalf of the very many who may not
even you exist - due to either being uninformed, too ill, or losing faith, in
what has been available up to now, with no real apparent effect ...
Di Newman & team
2 February 2006 23:31
I found out about invest in M.E from finding sleepydust while
searching the web. I am so glad that invest in M.E & groups like sleepydust
exist to raise awareness & support people with M.E as this is an illness that
causes isolation, is treated & thought by many as being something we exaggerate
or it's all in our heads; misdiagnosis happens far too often.
I feel it is an easier way that sometimes medical people can diagnose
'depression' when it's not; give a few anti depressants & then it's harder to
get listened to/heard because we are stuck with a mental heal label & then
questioned "are you sure it is not depression?".
For me I took myself off anti depressants. My then doctor wasn't happy about
this after 2 years of saying about chronic back pain. I finally got an MRI that
showed injury from L3 to S1 and, although I have had symptoms of ME for many
years, it wasn't until I got glandular fever that I was finally diagnosed with
PVFS, and am now on the waiting list after a month of this to see a consultant
who has an interest with patients who have ME. I got the opportunity of this
appointment after speaking with a physio about my back problems & mentioned I
got diagnosed with PVFS. I asked loads of questions that were on sheets of paper
& I got told I have M.E. I will be seeing the consultant in 4 to 6 months time.
I just thought I would share some of my story. I was going to start a diploma in
counselling in this academic year as I have done the courses part time up to
this level but at the moment I have had to put this on hold.
28 January 2006 18:23
Just want to say that I've just found your site after
reading about it on the Co-Cure website and I think this is a superb site and
just what we need. Thank you and good luck for the future. Let's hope we can
make some real progress at long last.
28 January 2006 02:01
Thank you for the Meridian Programmes!
Someone cfsme_severe Livejournal community sent me the link to your
site with the television programmes. I live in the North West of England so
would never have seen them were it not for you.
I just want to say I identified so much with the first girl featured, I too
was a sporty active 17 year old when I became totally incapacitated by ME
following glandular fever. I am 37 now and am still severely affected. Today
was an ok day, I took my mobility scooter for a spin around the block, then
came home and lay on the sofa and fell fast asleep with the TV on and someone
else talking to me in the room.
As this shows 20 years later I have nothing like a normal life. I am single
and have had to live with my now elderly parents to obtain the support I need
for daily living.
Like many I am totally disenfranchised with the lack of proper investment in
ME research. I am fed up with the focus being on psychological approaches only
(and I speak as someone doing an OU BSc Hons in Psychology, so I am not
anti-psych at all). We NEED to have money put into a biomedical approach to
find causes and, hopefully one day, a cure. I don't want to see others suffer
in the way I have. I don't want to see those girls featured losing 20+ years
of their lives in the way I have done.
Thank you for this site and for your work. My aim now is to spread the word
that you exist!