This article was written by a nurse and mom of a child on the Autism Spectrum. Though ME/CFS and ASD are different disorders they share many similarities, including dysfunction of certain metabolic pathways relating to methylation. People with ASD and ME/CFS share many genetic mutations that hinder methylation and add to the complications arising from anaesthesia. If you know your mutations, great. If you don't you may want to run methylation panels through Dr Amy Yasko ($500), or your entire genetics through 23&Me ($99).
via Matthew Smith At Indigo Jo Blogs
15th April, 2012 Indigo Jo
Recently the ME community online had to deal with the sad news of three deaths, including one of its best-known and most loved activists, Emily Collingridge (right). There were also two inquests which reported in the last couple of months, those of Lois Owen who died in 2009 and Victoria Webster who died last year. All had very severe ME and, it appears, died of its complications (the immediate cause of Emily’s death will not be known until the inquest is heard later in the year). A major cause of Emily’s final deterioration was a hospital admission in late 2009, following a period in which her condition had improved somewhat; the environment in the hospital was clearly very unsuited to someone who was highly sensitive to light and sound and needed a low-stimulation environment. A further problem with British hospitals has to do with the medical and nursing professions: the fact that there is a substantial number of people with in it who are uncaring, dismissive or abusive and it has led to many people with chronic illnesses becoming fearful or even phobic of hospitals. This simply should not be the case.
Last year, there was a book published by Jessica Kingsley Publishers titled How We Treat the Sick by Michael Mandelstam, which exposed abuse and malpractice in British hospitals. It was an excellent exposé of how hospitals treated elderly patients with a little bit of content related to younger disabled people, but it does not cover the NHS’s treatment of the chronically ill very much if at all. The journalist Christina Patterson has had a series of articles (, , , , ) published in the Independent this past week, her interest in the subject having been sparked by receiving inadequate care from nurses after treatment for cancer, which she spoke about in a Radio 4 broadcast. She concentrates on the quality of nursing and on what can be done to improve it, but also does not cover those who are subject to repeated, sometimes lengthy, hospitalisations, who see a variety of qualities of care depending on when they are admitted and in what circumstances.
I became interested in this as a result of hearing the story about Lynn Gilderdale in 2010; she had suffered from very severe ME (myalgic encephalomyelitis) from 1992 until her death by morphine overdose in 2008. She was entirely bedridden, was unable to speak or swallow, was in terrible pain (hence the morphine) and suffered persistent nausea, had osteoporosis and various endocrine disorders, and also had a drastically impaired memory, although this improved in the last five years or so. She required between 50 and 60 admissions to hospital, during which her mother remained with her, partly because she was terrified of hospitals as a result of traumatic, abusive experiences during two admissions in mid-1992, and partly because her mother needed to interpret the hand-signs she used to communicate (patients, including adults, often need a relative with them when in hospital for interpretation or advocacy purposes, but some staff fail to understand or accept this, as a senior nurse in Cambridge demonstrated very brutally to someone I know the night before I wrote this).
The main problem for Lynn, and many other severely-affected ME patients, was the widespread view in the medical profession that ME did not exist, or was a misnomer for a psychological or behavioural disorder, or was at worst a mild fatigue syndrome which could not possibly be as severe as Lynn’s condition. A well-known ME specialist diagnosed her with “hysteria” and handed her over to a psychiatrist, saying he had never seen anyone that ill or anyone fitting like Lynn did; a consultant on a psychiatric ward at Guy’s hospital lied to the Gilderdales that he believed ME was a physical disease, but did nothing to treat it and allowed Lynn to be abused by patients and staff. There were serious failures on subsequent occasions when she was admitted, including one where a surgeon who had performed a Hickman line replacement did not believe her when she indicated that she was in distress after the procedure; it turned out he had punctured her lung, turning what should have been a minor procedure into a life-threatening emergency which put her on life support, and resulted in a three-month hospital stay. On another occasion, who was immune-compromised and very sensitive to light and sound, was refused a side room because “protocol had changed” and had to stay on a main ward during an outbreak of a vomiting and diarrhoea bug.
Lynn was not alone in suffering such appalling treatment, and ME is not the only condition whose sufferers are affected in this way. The most vulnerable are those with rare or poorly-understood chronic conditions or those with controversies attached to them, like ME. While being wary or afraid is hospitals is not uncommon (they are, after all, places where people die), an awful lot of people with chronic disabling conditions have had repeated traumatic experiences and are afraid or even phobic of hospitals. I have a number of acquaintances with the connective tissue disorder Ehlers-Danlos syndrome (EDS), also known as Hypermobility Syndrome, the most obvious symptom of which is weak, hypermobile joints which dislocate easily. The most severely affected require full-time wheelchair use, tube feeding due to gastroparesis, and sometimes mechanical ventilation; some have lost their ability to speak and others have developed paralysis because a collapsing spine injures their spinal cord. A great many of those I know had difficulty getting diagnosed, and a long period in which many doctors suggested that their problems were “in their heads” and treated them with disdain and disbelief led to a permanent fear of hospitals, often leading to a dangerous reluctance to go to hospital, or stay there, in critical situations; the misdiagnosis can also lead to critical situations that would not otherwise have happened. A friend of mine recently wrote an article about her 13-year-long struggle to get her condition (which turned out to be EDS) recognised, during which she was referred to a team in London which is notorious for promoting psychological explanations for demonstrable physical conditions, and told to ignore her symptoms and not to associate with disabled people online or in person as it would make it look like she was “learning to be disabled”. She also noted that many doctors did not understand the difference between genuine conversion disorder (which the patient has no control over) and malingering.
Any campaign to improve nursing care and conditions in hospital is incomplete if it does not mention the terrible toll it takes on people with rare and chronic conditions. People have died, people have had their health permanently ruined, others have acted in ways that harmed themselves because of wrong advice or fear of doctors, nurses or hospitals, and others have committed suicide, wholly or partly because of trauma from medical abuse. The people who are campaigning on NHS standards should talk to some of the people affected by this and include it in their campaign. The charities concerned with these conditions, such as the ME Association and Hypermobility Syndrome Association, should also make campaigning for improved hospital conditions and against abuse a major priority. Major demands of the campaign should include:
“Fear-free Healthcare” was originally published on Indigo Jo Blogs — http://www.blogistan.co.uk/blog/ — on 15th April 2012. Republished from Indigo Jo Blogs with permission from Matthew J Smith, author. All rights reserved.
Most people who have ME/CFS also have genetic mutations in their genes involved in methylation, namely MTRR, MTR and perhaps MTHFR. For these people, just going by lab diagnostics for B12 is useless at best, and misleading at worst. Their B12 needs are extremely high.
Vol. 128 No. 12, December 1993
Neurologic Degeneration Associated With Nitrous Oxide Anesthesia in Patients With Vitamin B12 Deficiency
Teresa S. Flippo, MD; Walter D. Holder, Jr, MD
Arch Surg. 1993;128(12):1391-1395.
Vitamin B12 [cobalamin] is an integral component of two biochemical reactions in man: the conversion of L-methylmalonylcoenzyme A into succinyl coenzyme A and the formation of methionine by methylation of homocysteine. The transmethylation reactionis essential to DNA synthesis and to the maintenance of the myelin sheath by the methylation of myelin basic protein. Active vitamin B12 contains cobalt in its reduced form (Co+). Nitrous oxide produces irreversible oxidation to the Co++ and Co+++ forms that renders vitamin B12 inactive. Five cases (four from the literature and one new case) are presented in which patients unsuspected of having vitamin B12 deficiency developed subacute combined degeneration of the spinal cord following nitrous oxide anesthesia. Patients with vitamin B12 deficiency are exceedingly sensitive to neurologic deterioration following nitrous oxide anesthesia. If unrecognized, the neurologic deterioration becomes irreversible and may result in death.
(Arch Surg. 1993;128:1391-1395)
April 18, 2011
Thanks to Matthew Smith for his guest post, who blogs at samedifference as Indigo Jo.
One Last Goodbye is Kay Gilderdale’s account of her life with her daughter Lynn, who suffered from very severe ME from mid-1992 (after initially falling ill in November 1991) until her death in December 2008. ME has been described by Leonard Jason, an American doctor who suffers (more mildly) from the condition, known in that country as Chronic Fatigue Syndrome, as “more debilitating than just about any other medical problem in the world”, and Lynn had one of the worst ever cases of it. For all but the first few months of her illness, she was totally bedridden, unable to speak or swallow, in constant, terrible pain, and experienced what she described as “permanent nausea/vomiting” along with numerous complications including adrenal and ovarian failure; in her last couple of years, hardly any part of her body was unaffected.
After a prologue describing waiting for the verdict in her trial in January 2010, Kay moves to describing, in two chapters, her upbringing in Dublin, where her father was a successful businessman although he fell on hard times around the time of the author’s birth, and where her elder brother sustained an injury in a car accident, leading to brain damage and lifelong disability. As a trainee nurse in London, she met and fell in love with Richard Gilderdale, a policeman; the two married and moved to East Sussex, with her husband becoming a village policeman and the couple settling in Stonegate. Lynn was born in September 1977; they named her Lynette, but she later insisted on being called Lynn. Kay describes her as well-motivated, sporty, fond of music but not in an academic sense, and fun-loving, and notes that she took it for granted that she would get married and have children. When she became ill after her BCG vaccination in 1991, it initially seemed like any other bug, but her condition took in repeated infections that “seemed to have total and free access to her body”. She began to be sensitive to light and sound, and when her mother took her shopping before Christmas, naively imagining that “she could override [Lynn's] noise and light sensitivity with a spot of retail therapy”, Lynn begged to be taken home. She began falling over at home, having spasms and fits, and increasingly lost her memory, not knowing what things were or who people were.
When the Gilderdales sought help, they encountered hostility from everyone except their local GP, Dr Jane Woodgate. A consultant at Kent and Sussex Hospital in Tunbridge Wells angrily demanded to know why Lynn had missed so much school; the paediatrician Lynn was referred to diagnosed her with ME, saying he had seen many young people like her and they all got better; he told her she was lucky to have a “fashionable” disease. When Lynn was almost at rock bottom and could no longer swallow, they got her admitted to a clinic in north London that supposedly specialised in ME, but at which she encountered terrible cruelty (she later alleged that she had been sexually assaulted there, although this book does not mention that). A consultant performed a “psychological experiment” by putting Lynn in a dark room with heavy curtains and removing her clock, and finding himself unable to explain the severity of Lynn’s condition, he referred her to a psychiatrist. In her next hospital, Lynn overheard nurses talking about her and saying that her father had “obviously” sexually abused her, while in a psychiatric unit at Guy’s Hospital in London, she was put in a windowless room where children were able to throw things at her. By the end of her time there, she had lost the ability to speak.
At every point, the Gilderdales were lied to, assured that the doctors regarded ME as a physical illness rather than a mental one and that they had a treatment plan, but the plans never materialised and it rapidly appeared that they did not in fact accept that her illness was physical. Time after time, Kay and Richard Gilderdale had to intervene when Lynn was put into unsuitable accommodation (such as a room with building works outside) or treated cruelly or disrespectfully; if it were not for their daily visits, her situation could have been even worse than it was. During a later admission, one doctor frankly told Kay Gilderdale that “ME does not exist”, and that Lynn’s condition was “Lynn Gilderdale syndrome”. It was clear that none of them had ever seen a case of ME that severe before, and did not recognise it as the same thing even if they could see that Lynn was dreadfully ill. From my admittedly limited research, it seems as if there was a rash of cases of severe ME in adolescent girls dating from that time, and all the victims are still severely affected, but nobody knew that in 1992. The book Osler’s Web by Hillary Johnson, which tells the story of ME in the USA in the 1980s and early 1990s, mentions no case anything like it. Still, that does not excuse the outrageous cruelty they subjected Lynn to, nor the contemptuous attitude they displayed when they failed to identify Lynn’s illness with their tests, particularly as subsequent tests showed very serious abnormalities, as has been the case for many other sufferers.
Lynn’s illness was shocking in its severity, even compared to most of the other well-known severe cases (except, perhaps, Sophia Mirza). Fellow sufferer Vikki George (known for founding the charity Post Pals, which arranges for gifts to be sent to sick children, which she runs from her bed in a dark room in Bookham, Surrey), said in an appearance on ITV Meridian news last year that her case was “certainly the worst for the longest period”. What was most distinctive about it is the level of physical disability it visited on her which was seemingly permanent; she was effectively paraplegic, unable to feel or move her legs, unable to speak or swallow, and entirely bedridden, unable even to raise her head, consistently from mid-1992 until her death. It is quite common for people with severe ME to temporarily lose their speech, or to be tube-fed because of difficulties swallowing or severe nausea which means they cannot bring themselves to eat, but losing these faculties for so long is quite unusual, and raises the possibility of whether she would ever have regained them if her general condition had improved. Normally, a bedridden ME sufferer can get on a commode or make it to the toilet and back; Lynn would pass out if someone raised her.
Her ordeal in hospital in 1992 was not to be her last; over the years, she would suffer a punctured lung, resulting in needing life support, be accused of inducing a skin rash that actually originated with her cat (while in hospital for treatment for an adverse reaction to her liquid feed), have her back broken while being lifted, was awake during an operation to fit a PEG tube (that is not in this book, but you can read Lynn’s account of it here: http://chronic-health.livejournal.com/305565.html, towards the bottom of the page), and be made to stay on an open ward during her final stay, during which she contracted four separate bugs which persisted after her discharge. Small wonder that she decided never to be admitted again, whatever the circumstances.
From about 2004 onwards, Lynn’s memory and cognitive abilities began to improve, and judging by this book they improved very rapidly; unless the chronology is a bit out (and it does say that Lynn missed the fall of the Berlin Wall and Nelson Mandela’s release, which happened before Lynn fell ill, in 1989 and 1990 respectively), Lynn first recognised a written word aged 27, the age she reached in September 2004; her early online communications were assisted by Kay, to whom she signed what she wanted to write, and she then wrote them down so that Lynn could type them. Eventually, she was able to type unaided and made Kay promise that she would not read her diaries, a promise Kay kept even after her death. With the exception of the famous “DNR” posting from 2008 which has previously appeared in the press and which was read out in court, this book contains no material sourced from Lynn’s private blogs. Curiously, the name Jessie Oliver, which Lynn adopted for her online activities, never appears in the book.
Unsurprisingly, the last third, or so, of this book deals with the events which come after the punctured lung incident in October 2005. After that ordeal, Lynn began to lose hope in ever getting better, increasingly insisting that she was “too broken”. She drew up an advanced directive (i.e. a living will), which specified that she was not to be treated for anything that left her unconscious, although if she was suffering and conscious, she did want to be treated. “If I get a nasty lump (wots that ilnes kalled), I do NOT wont treatment 4 this,” she wrote. Most adamantly, “NO 1 SHOULD BE ABLE 2 PUT ME IN A MENTAL HOME”. Kay was quite surprised by discovering Lynn’s final suicide attempt; Lynn had promised not to attempt suicide behind her parents’ backs again after an earlier attempt and had been making plans for Christmas, but insisted that she could not go on another day. Kay notes that Lynn’s demeanour in her last few months had generally been happy (in between bouts of sickness and hours on the bed-pan), and that she had continued talking to her friends online and listening to music; this is not unusual in people who have resolved to kill themselves and are certain that their ordeal will soon be over.
I should declare an interest at some point: although I never knew Lynn Gilderdale under any name and have never met Kay, I do know some of Lynn’s friends including one who has been in contact with the author. I’ve come across some of Lynn’s online writing (although none of the friends-only stuff) and formed a very positive impression of her personality. She was certainly very caring, very appreciative of others’ concern for her welfare, and often took pains to avoid causing them any irritating by warning them of her abbreviated writing style or her long blog posts about her health (which, she said, was most of its content as her illnesses totally dominated her life) and sometimes played down health crises which had in fact been devastating for her, when conversing with severely disabled and sick friends (none of them quite as sick as she was). This book increased my respect for both the author and for Lynn. It showed Lynn to be a mature woman, understanding of others’ needs and eager to help them in any way she could. Of course, that is her mother writing, but it certainly fits with what I gathered from her own writing. There are passages about Kay’s feelings during the process of Lynn’s death and afterwards, such as thinking of Lynn in her “cell-like room” at Guy’s when she was 14 while confined in a police cell. There are no doubt those who will be sceptical and call it self-justification, but it fits with what those I know who have met her say about her, and what Lynn wrote about her.
This book is a powerfully-written memoir, which shows the depth of Kay’s love and respect for Lynn. She expresses no regret for assisting in Lynn’s suicide, but clearly feels a lot of grief at losing her (again, something mutual friends confirm). What this is not is any kind of investigation as to how widespread the kinds of abuses Lynn suffered were, or are, and such a book is sorely needed and Lynn’s story would no doubt feature heavily in it. There have been countless stories since of people with ME, including severe ME, suffering because of the disbelief of doctors who insisted that their illness was being “encouraged” or was the result of abuse, leading to children being removed from their families or threatened with such action. Sufferers admitted to hospital still find that the environment makes their symptoms worse as it does not accommodate their sensitivity to noise, light, smells and chemicals; only this past weekend I learned of a woman with severe ME being admitted to hospital in an emergency, and coming out worse than she went in. One would hope, however, that this book would open people’s eyes (including the medical profession’s) to how damaging their current practice can be, so that nobody else suffers a major relapse or is so traumatised that they give up on life. It’s a very much needed wake-up call.