Emily Collingridge, 1981-2012: such a short life, such a huge legacy

The reality of life with ME is often unrecognised – least of all by DWP/Atos – and tens of thousands of people with ME are unjustly ruled ‘fit for work’ by the obscene ‘Work Capability Assessment’ regime: This disability denial is a crime that cries out to Heaven for vengeance. Many so-called ME researchers with strong links to private medical insurance companies such as Unum have joined together to create a ‘Biopsyosocial Model’ to delegitimise the illness as a physical phenomenon and present the etiology of the disease as ideopathic (i.e. ‘all in the mind’ – ‘psychosomatic’). It is the same BPS school’s non-empirical ideology that underpins the ethos behind the DWP/AtoS ‘Work Capability Assessment’.

It is a fraudulent obscenity bought and paid for by private corporations profitting from the misery of human suffering.

Rest in Peace, Emily Collingridge. Gone, but NEVER forgotten.

by Tony Britton on March 21, 2012

Emily Collingridge

Emily Collingridge, who died in hospital on Sunday at the age of 30, had hardly lived – but she leaves a huge legacy.

It will endure in the form of ‘Severe ME/CFS: A Guide to Living’, the 140-page book which she researched and compiled when all the health odds were stacked against her. It’s been on the ME Association’s highly recommended list since it was first published two years ago.

At this point in time, one can only guess what writing this well dipped-into book took out of her but all the clues point to an utter, complete and this time unshakeable exhaustion.

Emily had been ill since the age of six when she went down with mumps. For nine years – until she received her ME diagnosis in 1996 – she suffered a huge array of bewildering and worrying symptoms for which doctors could find no cause.

By then, her health was shot through and she had to use a wheelchair. Rather than bemoaning her lot, she had the good fortune to find an organisation much to her liking and threw herself into her first job as PR and Fundraising Manager for the Association of Young People with ME (AYME).

Emily’s powerful presence there, even though she mostly worked from home, was soon felt far and wide and was recognised nationally by the Whitbread Volunteer Action Awards. At the age of 21, she left AYME to become a project adviser for several other charities, including Home Start.

In 2005, she had a major relapse and, after AYME had published her book, she was also too ill to undertake the usual book tour and press interviews expected on such occasions.

Tributes have been pouring in since the shock news of her death in King’s College Hospital, London, after a lengthy admission.

Typical of comments on the Facebook page dedicated to the book is this from Cathy Stillman-Lowe: “Her book is an extraordinary achievement, and testament to her determination to help others and turn her suffering into a positive legacy for those with severe and very severe ME. I was privileged to work with her as a proof-reader on the book, and so saw her at work first-hand. God rest her soul, she suffered greviously with her illness, and is now at peace. Emily Rose – may flights of angels sing thee to thy rest!”

And our own medical adviser, Dr Charles Shepherd, had this to say today: “We learned about Emily’s tragic death on Monday and I have been in regular contact with the family since then. Despite being very severely ill Emily made a major contribution towards helping other people with this illness and she will be sadly missed. We send our condolences to her parents and the family at this very difficult time.”

No announcements have yet been made about the funeral arrangements.

Emily mother’s Jane has asked for these last written words from Emily to be reposted. About a year ago, Emily tapped them into the keyboard of her smartphone over many weeks – while she still had the strength in her body to do so.

Emily’s Appeal

It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.

“My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now – it’s like that every single day. After all these years I still struggle to understand how it’s possible to feel so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor’s visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I’ll go mad with the suffering. Of course it can also be as bad as this for no particular reason – and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music – the list is long. ME has made my body an agonising prison.

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I’m on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable – this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.

Many days I feel utter despair.

But, unlike some sufferers, over the long years in which I’ve had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope.”

www.meassociation.org.uk

Jo Best of ‘Let’s Do it for M.E.!’ writes:

Emily’s Appeal was originally posted in May 2011, with this message from her parents:

“Severe ME is utterly devastating. It’s time for proper research and proper care”. That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she hopes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.”

In July 2011, a small group of patients, housebound and bebound by ME, launched a campaign to raise awareness and funds in support of a proposal by the independent UK-registered charity Invest in ME for a Centre of Excellence for Translational Biomedical Research – the first of its kind in UK/Europe. This will be a combined patient examination and research facility, based at the University of East Anglia, where the first-class facilities at the research park include The Genome Analysis Centre. There will also be opportunites for education and training of health professionals.

The focus of the work will be on virology and immunology. The most common trigger for ME is acute viral infection (Emily’s ME was reportedly triggered by mumps) and, although it has been classified by the World Health Organisation as neurological since 1969 (WHO ICD-10 G93.3) along with post-viral fatigue syndrome, it is also commonly described as a neuro-immune disease.

To say that ME is “barely understood by science” isn’t strictly correct, as there are some 4,000 biomedical science papers on ME, as well as specialist post-mortem evidence, including finding inflammation of the brain and spinal cord, which would account for the horrendous pain and neurological symptoms of ME. The problem is that there is no clear and purposeful strategy for biomedical ME research aimed at finding the root cause and therefore effective treatments for this multi-system organic disease.

Invest in ME plans to develop such a strategy in collaboration with researchers of international standing. Invest in ME is also a founder member of the European ME Alliance and organises an annual international conference on biomedical ME research – the 7th takes place in Birdcage Walk, London, on 1st June 2012.

To date, the MRC has only funded research based on the idea originating from a small group of psychiatrists that ME is merely a belief that one is ill – a somatising disorder whereby symptoms perceived by the patient are of psychological cause, and not due to an underlying organic disease process.

The DWP co-funded the most recently-published of such studies and the researchers have also since declared their involvement with Health Insurance companies. Is it more cost-effective to deny patients both treatment and sickness or disability benefits or health insurance claims by refusing to accept that they have a genuine organic disease?

Is it really possible for a 6 year old child to maintain an illness belief so strong that it causes her horrendous pain and suffering thoughout her life, in spite of clearly being a vibrant and strong fighter, until she dies aged 30? Can young people really die from a belief that they are ill?

The culture of pervasive denial of the reality and truth about myalgic encephalomyeltis that has been allowed to spread unchecked and unchallenged over recent decades must now end. Young patients will not recover from this organic disease by being offered “cheerful support” and “psychological help”. Services for children with ME are provided under Mental Health. There will continue to be widespread suffering and premature deaths for as along as this inappropriate categorisation and consequently approach to treatment in the NHS persists.

Sophia Mirza died in 2005, Lynn Gilderdale died in 2008, Emily Collingridge has now died in 2012. All three in their early 30s. They are not isolated cases of deaths from ME and there are also many thousands in UK alone suffering right now. One such young woman was featured in a local media piece about Invest in ME’s proposal for the Centre of Excellence in 2011.

The MRC recently announced it was funding ME research to the tune of £1.6m, however these a studies are not part of a clear strategy to find root cause or treatment and some are not not even on ME itself. ME is a complex multi-system disease, so a scattergun approach to studies on the various symptoms, when there is already a wealth of research evidence to build on, is least likely to yield answers and find treatment.

The hallmark symptom is described in the International Consensus Criteria for ME, published in 2011, as post-exertional neuro-immune exhaustion, previously known as post-exertional malaise. All genuine biomedical ME research is welcome, but needs to be part of a clear strategy if we are ever to read the final chapter of the seemingly never-ending story of ME research.

Research carried out at Dundee University, co-funded by ME Research UK and The Young ME Sufferers Trust, and published in 2010 showed evidence of persistent underlying viral infection in children with ME. The same was found in research on adults with ME in 2005. There are no plans to follow up these findings with public-funded research – why not? This is exactly the pattern of biomedical ME research to date – promising findings ignored and left to gather dust in the archives. We need biomedical research findings to be translated to treatment options.

Invest in ME’s proposal for the Centre of Excellence is positive, practical, purposeful, achievable and cost-effective. It should have the proactive support of government and any organisation purporting to operate in the best interests of patients with myalgic encephalomyelitis. We are ME patients and it is giving us hope of treatment at last, not only for the many thousands of patients across the UK but millions beyond. Tragically, this will be too late for Emily and others we have already lost to this dreadful disease. Those of us who remain have no more time to lose.

To find out more about our patient-driven campaign, please see our website or that of Invest in ME charity.

http://www.ldifme.org

http://www.investinme.org

Jo Best

Let’s do it for ME!

See also this piece from Lindanee’s Blog from America:

Unum’s Guidelines “White Paper” Fibromyalgia Position Statement

April 1, 2012 by lindanee

Just before leaving Unum in 2002 one of its physician consultants handed me a copy of Unum’s “position statement” regarding Unum’s handling, review, and philosophy in administering fibromyalgia claims. Although this report is now over seven years old, there are strong evidences based on Unum file reviews of fibromyalgia claims that many of its former guidelines are still supported by the company’s medical staff and claims managers to the demise of many insureds and claimants.

The report itself states, “Please note that although these guidelines have been written for fibromyalgia, considerable overlap exists between fibromyalgia and other defined syndromes of medically unexplained symptoms (such as chronic fatigue syndrome.”)  Therefore, it is clear Unum considers CFS in the same impairment category as Fibromyalgia Syndrome.

Unum’s Fibromyalgia Position Statements and Guidelines list the following internal Unum physicians as contributors to the report:

Edward C. Alvino, MD  and Nancy Ball, MD

Robert N. Anfield, MD, JD and Norman Bress, MD

Alan Cusher, PhD and Marianne Justin

Les Kertay, PhD and Paul Martin, MD

Buron McDaniel, MD and Thomas McLaren, PhD

It is reasonable to assume then, at least in July of 2002, Unum’s executive medical director had already provided the company’s medical resources with a “position statement” regarding the management and review of fibromyalgia claims submitted for payment.

On page 2 of the report entitled: Our Current Position Statements of Fibromyalgia the following statements are made:

  • Fibromyalgia is a define syndrome; one that represents a patient population experiencing a constellation of medically unexplained symptoms.
  • Current evidence does not allow one to conclude that fibromyalgia is a physical disease – it etiology remains unknown and to date no pathophysiological process has been established.
  • Psychological factors may exist in a significant portion of individuals label with fibromyalgia.
  • Treatment plans, which include cognitive behavioral therapy and a graded low impact aerobic, conditioning program, have been shown to improve symptoms in some fibromyalgia patients.
  • The vast majority of individuals labeled with fibromyalgia have no physical impairment; they are on a physical basis able to return to work (especially with appropriate care). Generally, continued activity (including work) is of value even in the face of symptoms.

Contained within the position statement are Unum’s general “current findings on disability” related to fibromyalgia. The document makes the following statements:

  1. It is estimated that between 10-12% of the general population experience chronic widespread body pain. Most do not see a physician for this symptom and proceed with the business of daily file.
  2. The majority of fibromyalgia experts are presently in agreement that fibromyalgia patients are not physically impaired.
  3. Severe psychological distress in patients with fibromyalgia not only plays a significant role but also may lead to psychological impairment.
  4. Physicians should discourage inactivity and disability in fibromyalgia patients because if these are prolonged there is an adverse effect on the prognosis.
  5. We must halt the trend to label patients with FMS as disabled, and we must interfere with the social trend toward encouragement of the disability concept.

In 2002 Unum’s solution to the “somatization” of symptoms of fibromyalgia culminated into: A Fibromyalgia Process Proposal.

In summary, Unum’s contributing physicians proposed getting involved early with the insured’s primary care physicians in order to prevent a disability from being supported. Recommendations were also made in the report for detailed phone interviews, nurse-to-doctor and doc-to-doc calls for the purpose of Unum’s early intervention of a disability due to fibromyalgia. Unum’s general consensus or understanding of the disease, as indicated in the position paper, is that fibromyalgia is NOT a physical disease, is “somatoform” (imagined), and that with a little persuading of the doctors, in most cases the insured could return to work full time.

The idea of a major disability company writing a “position paper” stating “the official position of the company with respect to fibromyalgia (and related impairments)”, means all insureds who file claims for fibromyalgia don’t get an objective fair review since outcomes and liability determinations are predetermined by Unum’s medical department before any claims are actually filed.

Further, Unum’s position that fibromyalgia is NOT a physical disease but a “made up mental one” allows the company to abuse the 24-month mental and nervous provision in the policy by limiting benefits to a much shorter period of time. Further statements by Unum calling fibro symptoms “somatoform” also gives the company a great deal of wiggle room to claim the impairment is “self-reported” and also limit or deny benefits.

There was also a time when the Unum policy was to conduct surveillance on every fibromyalgia claim. I thought this to be a tremendous waste of Unum’s time and money because the treatment plan for nearly all fibromyalgia patients includes “exercise and daily activity as able.”  Physicians want their patients to remain active, so catching someone on a CD walking around a Mall is exactly what the doctor ordered. Fibromyalgia patients are NOT required to remain in bed with the covers up to their nose.

In 2012 Unum continues to deny most fibromyalgia claims, or, if the claims are initially paid, they aren’t paid for very long without aggressive Unum intervention to encourage rheumatologists to return the insured to work as soon as possible.

Although Unum’s position in 2002 was as described above, one can reasonably document from  current claim files the company’s position hasn’t changed in the last seven years despite advancements in new technologies and using innovative clinical approaches for the diagnosis, treatment, and management of pain. Medical authorities now know fibromyalgia isn’t “all in your head” and aerobic exercise on a treadmill won’t cure disabling muscle and joint pain. Fibromyalgia, and all of the symptoms associated with it, such as fatigue, insomnia, joint and muscle pain can be extremely disabling thereby preventing insureds from sustaining work on a consistent basis.

Still, Unum has a long history of labeling fibromyalgia as a psychological syndrome rather than a bon fide physical impairment which often precludes work. After all, it’s in Unum’s best financial interest to not pay fibromyalgia and CFS claims.

In addition, Unum’s internal physician consultants are quite skilled in convincing physicians their patients can work full time jobs with a little effort. Unfortunately, fibromyalgia and chronic fatigue are two areas of disability management easily used by Unum to support goals for financial profit. Incidentally, FMS and CFS are only two of the impairments Unum has difficulty paying. Others include early onset MS, RSD, Lupus, PTSD, and chronic back pain.

Unum does a grave disservice to its customers when it denies claims by telling insureds, contrary to the recommendations of the American College of Rheumatology, “their pain is all in their head”, and symptoms are all “imagined or made up.” Instead of realizing Unum is using this defense to get out of paying claims, insureds may actually begin to think perhaps they really ARE crazy, and the severity and length of the disability is nearly more than some people can actually deal with.

Fibromyalgia insureds must now realize: 1) fibromyalgia is a real physical disease; 2) the condition is often treated with medication; 3) symptoms of joint pain, fatigue, and depression are real; and 4) fibromyalgia is always treated with recommendations for exercise and daily activity; do not be afraid to exercise because Unum conducts surveillance and holds your treatment activity against you. Obey your doctor.

By the way, there is considerable evidence Unum communicated it’s position regarding fibromyalgia and chronic fatigue syndromes to the British Government which is now denying welfare claims (with the help of ATOS) FMS and CFS claims in the UK as well. 

If you have any questions concerning Unum’s 2002 position paper or how to successfully manage a fibromyalgia claim in 2012, please contact us privately. DCS, Inc. provides case management and expertise to clients diagnosed with FMS and CFS.

NCDI does have a copy of Unum’s actual position paper and will provide it by email upon request.

http://lindanee.wordpress.com/2012/04/01/unums-guidelines-white-paper-fibromyalgia-position-statement/

Joe Kane writes:

A former member and professional medic of the Bad Science Forum was subjected to professional disciplinary proceedings for his vile abuse of ME patients and doctors who took the physical medical condition of ME patients seriously.

He should have been charged with criminal disablist hate speech too. His abuses are implicated in a patient committing suicide. See the only comment on the thread to see what disabled ME patients have to put up with from these anonymous internet disablist BSF trolls – ‘Deluded quack’ jibe nearly ruined doctor’s career, Daily Telegraph, 21 December 2011

http://www.meassociation.org.uk/?p=9879

 

Comments
  • Sarah Lawry March 24, 2012 at 8:26 pm

    From: http://www.blogistan.co.uk/blog/mt.php/2012/03/20/emily-rose-collingridge-1981-2012

    “The book [Emily’s] received widespread acclaim, including from the 25% ME Group which is opposed to AYME’s position on matters such as the NICE Guidelines (the PACE trial had not been published by then). Having corresponded with Emily’s mother Jane and others on the Facebook group set up to promote the book, it was clear that the Collingridges subscribed to none of AYME’s revisionist views about ME; they regarded it as a neurological disease and expressed dissatisfaction at the lack of biomedical research and the influence of Prof Simon Wessely and others like him. They also discussed the possibility of setting up special units for environmentally sensitive patients, including those with ME.”

    I used to be a member of the MEA but have been unable to donate or support them for many years (10?). I have heard from Emily’s friends that the part I quoted above is absolutely correct – the fellow ME sufferers that I know (mostly severe sufferers who are well informed) wouldn’t donate to AYME or MEA under any circumstances – I would consider it a waste of precious funds for biomedical research. AYME support CBT and GET which is dangerous to the point of death and causes increased disability. Please see the link below for “101 reasons” and all the evidence AYME could ever need:

    Reason 2 for example… provided by Dr William Weir:

    “Two forms of treatment…are CBT and GET CBT is a psychological
    treatment. Its application in what is certainly an organic disorder
    is basically irrational….

    Its application is counter-intuitive, particularly when one of the
    most debilitating and well recognised symptoms of ME/CFS is
    post-exertional malaise which can put some patients in bed for days
    after relatively trivial exertion”

    from:http://carersfight.blogspot.co.uk/2010/03/101-good-reasons.html?spref=fb

    There will be more deaths and continued suffering unless “Emily’s Appeal” is heeded. RIP Emily and all those lost to this dread disease that cannot be exercised away. If only.

    Emily’s last words again… “And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

    Please put an end to the abandonment of people with severe ME and give us all real reason to hope.”

  • Rosalind Amor March 27, 2012 at 6:10 pm

    I and my Mum were devastated to hear about this. Emily was a fighter and should be an inspiration to us all to finish the fight for awareness and treatments in her memory

  • Jo Best March 28, 2012 at 12:35 pm

    Emily’s Appeal was originally posted in May 2011, with this message from her parents:

    “Severe ME is utterly devastating. It’s time for proper research and proper care”. That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she hopes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.”

    In July 2011, a small group of patients, housebound and bebound by ME, launched a campaign to raise awareness and funds in support of a proposal by the independent UK-registered charity Invest in ME for a Centre of Excellence for Translational Biomedical Research – the first of its kind in UK/Europe. This will be a combined patient examination and research facility, based at the University of East Anglia, where the first-class facilities at the research park include The Genome Analysis Centre. There will also be opportunites for education and training of health professionals.

    The focus of the work will be on virology and immunology. The most common trigger for ME is acute viral infection (Emily’s ME was reportedly triggered by mumps) and, although it has been classified by the World Health Organisation as neurological since 1969 (WHO ICD-10 G93.3) along with post-viral fatigue syndrome, it is also commonly described as a neuro-immune disease.

    To say that ME is “barely understood by science” isn’t strictly correct, as there are some 4,000 biomedical science papers on ME, as well as specialist post-mortem evidence, including finding inflammation of the brain and spinal cord, which would account for the horrendous pain and neurological symptoms of ME. The problem is that there is no clear and purposeful strategy for biomedical ME research aimed at finding the root cause and therefore effective treatments for this multi-system organic disease.

    Invest in ME plans to develop such a strategy in collaboration with researchers of international standing. Invest in ME is also a founder member of the European ME Alliance and organises an annual international conference on biomedical ME research – the 7th takes place in Birdcage Walk, London, on 1st June 2012.

    To date, the MRC has only funded research based on the idea originating from a small group of psychiatrists that ME is merely a belief that one is ill – a somatising disorder whereby symptoms perceived by the patient are of psychological cause, and not due to an underlying organic disease process.

    The DWP co-funded the most recently-published of such studies and the researchers have also since declared their involvement with Health Insurance companies. Is it more cost-effective to deny patients both treatment and sickness or disability benefits or health insurance claims by refusing to accept that they have a genuine organic disease?

    Is it really possible for a 6 year old child to maintain an illness belief so strong that it causes her horrendous pain and suffering thoughout her life, in spite of clearly being a vibrant and strong fighter, until she dies aged 30? Can young people really die from a belief that they are ill?

    The culture of pervasive denial of the reality and truth about myalgic encephalomyeltis that has been allowed to spread unchecked and unchallenged over recent decades must now end. Young patients will not recover from this organic disease by being offered “cheerful support” and “psychological help”. Services for children with ME are provided under Mental Health. There will continue to be widespread suffering and premature deaths for as along as this inappropriate categorisation and consequently approach to treatment in the NHS persists.

    Sophia Mirza died in 2005, Lynn Gilderdale died in 2008, Emily Collingridge has now died in 2012. All three in their early 30s. They are not isolated cases of deaths from ME and there are also many thousands in UK alone suffering right now. One such young woman was featured in a local media piece about Invest in ME’s proposal for the Centre of Excellence in 2011.

    The MRC recently announced it was funding ME research to the tune of £1.6m, however these a studies are not part of a clear strategy to find root cause or treatment and some are not not even on ME itself. ME is a complex multi-system disease, so a scattergun approach to studies on the various symptoms, when there is already a wealth of research evidence to build on, is least likely to yield answers and find treatment.

    The hallmark symptom is described in the International Consensus Criteria for ME, published in 2011, as post-exertional neuro-immune exhaustion, previously known as post-exertional malaise. All genuine biomedical ME research is welcome, but needs to be part of a clear strategy if we are ever to read the final chapter of the seemingly never-ending story of ME research.

    Research carried out at Dundee University, co-funded by ME Research UK and The Young ME Sufferers Trust, and published in 2010 showed evidence of persistent underlying viral infection in children with ME. The same was found in research on adults with ME in 2005. There are no plans to follow up these findings with public-funded research – why not? This is exactly the pattern of biomedical ME research to date – promising findings ignored and left to gather dust in the archives. We need biomedical research findings to be translated to treatment options.

    Invest in ME’s proposal for the Centre of Excellence is positive, practical, purposeful, achievable and cost-effective. It should have the proactive support of government and any organisation purporting to operate in the best interests of patients with myalgic encephalomyelitis. We are ME patients and it is giving us hope of treatment at last, not only for the many thousands of patients across the UK but millions beyond. Tragically, this will be too late for Emily and others we have already lost to this dreadful disease. Those of us who remain have no more time to lose.

    To find out more about our patient-driven campaign, please see our website or that of Invest in ME charity.

    http://www.ldifme.org

    http://www.investinme.org

    Jo Best
    Let’s do it for ME!

  • Babo September 9, 2012 at 12:40 pm

    Lets not do it for ME until Invest in ME tell us what criteria they are using in their reserach, the type of PEM they are using and if they are working with the WPI.

  • Purplewheels September 10, 2012 at 3:17 am

    I have had fibromyalgia since 2000 after I had what I thought was some kind of flu that all my colleagues had – they got better but I didn’t. The UK government will believe anything that they want to hear. It didn’t help that I was misdiagnosed for three years by my GP and it was only after I requested a referral to a rheumatologist that I was told ‘You have fibromyalgia, there is no treatment so learn to live with it’ I was promptly discharged from that service.

    My friend has a diagnosis of CFS/ME and I believe that most people have absolutely no idea of what that is like. Even thinking too much has led her to having to take to her bed because of the total, overwhelming exhaustion she suffers from. I probably wouldn’t have believed it myself if I hadn’t have seen what it has done to her.

    I’d like to make one small point here and that is that somatisation does NOT mean that something is ‘made up’ or ‘all in the mind’ – what it means is that mental distress and disturbance manifest themselves as physical symptoms – it should never be thought of in the way that most people do.

    Those of us who have lived with relentless pain for years grow weary and it becomes harder to fight for some kind of life. I have my esa form to complete and I am terrified that I will be assessed as fit for work because I truly am not. If I could work I would do – it’s not as if I am given enough benefits for a life of luxury. My benefit is pitiful, it’s a particular insult when I think about how much money I have paid in National Insurance and Income Tax over the years that I was able to work. My friend earned much more than me and so paid more in and then she’s accused of malingering. It would be laughable were it not so tragic.

  • Humanity2012 September 11, 2012 at 4:09 pm

    Demonically Evil the Suffering of People with ME being Let Down by the
    Evil Work Capability Assessment

    Shame on Everyone who still Supports the Con Dem Regime

  • Purplewheels December 16, 2012 at 12:58 am

    It is so shocking to hear about Emily’s death. I don’t think I will show it to my friend who has ME, it might just tip her over the edge!

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