Invest in ME - Guest Gallery of Stories and comments for 2006

Guestbook Gallery 2006

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Jayne	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.

Janette	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.

Cathy	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.

Caroline	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 happen next? 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 patient." What type of treatment will these psychiatrists come up with then? Will we be locked up like the late Miss Sophia Mirza?

Jacqueline	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.

Elizabeth	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 sufferer.

Brigitte	16 August 2006 01:00
Hi there, 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, Brigitte

Karen	15 August 2006 22:46
Hello, 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 else's lives. 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. Karen

Dottie	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 the documentation. 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 his ME.

Gail	24 June 2006 05:06
I live in the UAE, am now a senior citizen and have had ME since 89. 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.

Helen	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.

Sharon	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 to use. Can you tell me if it is possible to take part in any on-going or forthcoming trials? 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.

Deborah	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. ME/CFS/FM really 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 systematically strangled. 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 (Deborah's real name has been provided)

Lesley	11 March 2006 18:20
This is an excellent campaigning website - keep the pressure up!!! 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!

Douglas	08 March 2006 12:31
I thought 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. This 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 cares. All the best Douglas (Douglas' real name has been provided)

Jill Mclaughlin	6 March 2006 15:58
Thank you for the great work!

Lesley Rooney	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.

C Johnson	28 February 2006 19:21
Thanks to all of you for doing this. Your all so great!!!

Di Newman	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 ... Regards Di Newman & team

Susan	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.

Keith Riley	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.

Marthe	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! Kind regards Marthe