1. POST PALS – SEND A NOTE, CARD, EMAIL OR GIFT TO BRIGHTEN A VERY SICK CHILD’S DAY
Once upon a time, there was a very sick little girl, Vikki. As she looked around her room at the notes, cards and gifts that brightened her day, she thought about other seriously ill kids. If they made her day a little brighter, it would for them, too. The charity Post Pals was born… and you are invited. The idea is simple: choose a sick child; read a little about them; then send a card, note, email or little gift to brighten their day.
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2. NOW BRIGHTEN VIKKI’S DAY
Vikki is still seriously ill. Next week, on the 21st December 2014, Vikki will be celebrating her 30th birthday… tragically, her 13th birthday in bed. She has the devastating, seemingly transmissible, neurological disease, Myalgic Encephalomyelitis which is spreading across the world and now affects millions of people, including children as young as 5 years old. Severe sufferers are prisoners in their own homes, trapped in bodies that no longer function, feeling like a sumo wrestler is sitting on their chest. Very severe sufferers are often completely paralysed, unable to even turn over in bed, living in a semi-coma, almost in a state of hibernation, and tormented with painful electric shocks. And that’s just the beginning of their unrelenting torment – 24 / 7 / 365. There is currently no cure. No treatment. Only management of symptoms. There are objective tests for this disease, but medical authorities admit they are expensive, onerous, and not readily available. Many have been ill for decades with this disease. While researching this article, I came across one lady who has had it since 1956. Some have likened this catastrophic illness, with symptoms similar to M.S. or polio, to a plague or canary in a gold mine as it is spreading all over the world, while – since at least 1988 – authorities (and hence doctors) across the world seem to be not only deliberately ignoring it, but treating it as a ‘joke’ and even actively suppressing research. (Have you noticed the huge increase of people also getting cancer…? Keep reading.) Vikki has a to-do list… with a twist. Because of her illness and disability she has invited us to do it for her. She says, ‘See I have these plans in my head but I’m stuck 24/7 in a hospital bed! Please help tick things off my 30 before 30 list that I’m too unwell to do myself.’ And while you are at it, make sure you leave Vikki a note of encouragement for her 30th birthday.
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ABOUT MYALGIC ENCEPHALOMYELITIS (M.E.)
Myalgic Encephalomyelitis has been recognised by the World Health Organisation’s International Classification of Diseases since 1969 as a distinct, organic, neurological disease.
“M.E. appears to be in this same family of diseases as paralytic polio and MS.” Dr Byron Hyde
“We can’t claim to have eradicated polio until we eradicate ME. They are so closely related.” Dr Elizabeth Dowsett
“Physicians who treat ME/CFS have told me that they would rather have cancer than this disease…” Llewellyn King, journalist, White House Chronicle
“[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.”
“Patients with this illness can experience a level of disability that’s equal to that of late stage AIDS, patients undergoing chemotherapy, or those with secondary Multiple Sclerosis.” Professor Nancy Klimas, USA AIDS and ME/CFS specialist and researcher
“My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V…”
‘M.E. patients experienced greater “functional severity” than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses.’ Dr Dan Peterson
“…the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.” Dr. William Reeves, former CDC Chief of Viral Diseases Branch, 2006 CDC Press Conference
“…explains that circulating blood volume levels of 60 – 70% of expected are very common in M.E., and that readings as low as 50% are common in more severely affected patients. However, it should be noted that as the vast majority of those with very severe M.E. are of course far too ill to have this test…” Dr Byron Hyde
“Patients range from being forced to work less, to being bedridden to being hospitalized hardly able to speak or move… the lowest functioning of any chronic illness. It is estimated that only 5% of patients ever reach a full recovery; The majority suffer for decades and lifetimes. It costs our nation an estimated 24 billion dollars per year in lost productivity and medical costs as people literally drop off the map… To give you some perspective on how little the illness is funded, HIV receives $25,000 per patient per year and CFS receives $1.56 per patient per year. That is shockingly little funding for an illness as serious…” CFS Research Center, Stanford University
“I’m in regular contact with people in the forefront of the research, such as Professor Richard Bruno in the States, who does so many MRI scans. You can see the brain. He says it looks as if it’s had a little shotgun taken to it, and if you compare it with the brain stem of someone who’s had polio, it’s almost the same.” Jane Colby, Tymes Trust, an organisation advocating for children with M.E.
Stanford University School of Medicine study finds brain abnormalities of diminished white matter and white matter abnormalities in the right hemisphere in M.E. patients (2014).
Jen Brea’s story (TED blog) a good overview of M.E. from the director of the award winning Unrest Film; Jen was a PhD student when she became ill. Discovering that the medical community did not recognize her illness and worse, dismissed it, Brea did her own research and discovered that there is a name for what she was experiencing: myalgic encephalomyelitis (ME), a devastating, misunderstood and ignored disease affecting millions.
The Shocking Disease (hfme.org) Just explaining the basic facts of M.E. falls far short of really getting across what a hell on earth M.E. really is.
Myalgic Encephalomyelitis International Consensus Criteria, Journal of Internal Medicine
What it feels like – symptoms – severity scale
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A VERY SERIOUS, DEVASTATING – AND SEEMINGLY CONTAGIOUS? – DISEASE…
“…over 60 M.E. outbreaks have been recorded worldwide since 1934…” hfme.org
8 children go sledding in October 1985 – within a few weeks, they all got sick – 6 months later they were still sick – over the next 2 years, until the end of 1987 [note that date] the illness had spread to 214 (out of 862) people in their USA rural village within a 30km radius… Around the same time, investigators were looking at a similar outbreak at Lake Tahoe, USA while making doctors believe that the outbreak in each location was unique.
“…our study showed ME/CFS was the single biggest cause of long term sick leave in British schools, bigger than cancer and leukaemia combined. No other illness came close. In short, we’d found a cluster pattern, a plague, in our schools.” Jane Colby, Tymes Trust, advocating for children with M.E.
Red Cross – blood donation exclusion list “Chronic fatigue syndrome is a serious, debilitating disease of unknown cause, and the possibility of a link to an infectious agent cannot be excluded. Additionally, the potential effect of long-term blood donation on the health of donors who have previously suffered chronic fatigue syndrome is unknown. As a result, any person with a past history of this disease is unable to donate blood.”
CDC letters (1992) advise ‘prudent to refrain from donating blood’ “Both letters–one composed by William C. Reeves, M. D., at the Centers for Disease Control (CDC) and the other, by George W. Rutherford, then head of Infectious Diseases for the California Department of Health–were replies to my inquiry (which documents some of my immunilogical AIDS-like test results, while I was under the care of Daniel L. Peterson, M. D., of Incline Village, Nevada) about the safety of the blood supply, were I, a well-documented CFIDS patient, to donate blood. These communiques were sent on 13 June 1992 to about a dozen national news agencies. Shortly thereafter, on one day alone, the CDC received over 300 media calls regarding CFIDS contagion… However, on the 27 March 1996 edition of Prime Time Live, Reeves–along with the head of CFIDS research at the National Institutes of Health (NIH), refused to be interviewed–and stated by telephone that CFS “is not caused by a virus”; that there are/were “NO cluster outbreaks,” labeling the one at Lake Tahoe as “hysteria”; and that CFS “does NOT affect the immune system.”
“The retrovirus XMRV has been found to be present in CFS patients and has led them to worry about transmitting the disease to family members. One woman… from Britain wrote that her husband contracted the disease after years of nursing her…” Llewellyn King, USA Journalist, White House Chronicle
“My husband cares for me in the same way, and for our daughter as well. He has ME himself, so it’s a precarious life…” Bethany Wilson
“My young daughter getting my illness and being so compassionate when most of the adults around me were neither.” John Herdisms
Myalgic encephalomyelitis, chronic fatigue syndrome: An infectious disease This is all that matters. All else is noise. CDC, NIH, FDA know, no matter what they’ve been pretending for 30 yrs. Hillary Johnson, Journalist, 2015
I never imagined my sister would die from ME “…the information my Google searches revealed at the time did not correspond with… my three years of nurse training… I saw how ME was viewed from the other side of the fence and it wasn’t good or accurate… But my sister became the first person in England to officially die from ME… The post-mortem revealed the physical evidence of Sophia’s ravaged nervous system… made news around the world, but it hasn’t changed how people with ME get treated…”
M.E. Memorial list …Medical communities, media and governments understand neither how debilitating this illness is nor how those with it suffer. The United States National Institutes of Heath are not keeping track of the morbidity and mortality rates, although many have died and many more will if more is not done…. The majority of these patients did not have the medical care they needed; they suffered unremitting pain with little hope of relief or comfort. Here is another M.E. memorial list with personal stories.
“Dear Dr. Jones, When you say, “ME is controversial”, did you check that with Alison, Annabel and Sophia? Now, I’m sure you didn’t, because all three died of ME. Yes you read that right, the official cause of death in all three cases was ME. Australian Alison Hunter died of ME in 1999, Annabel Senior died of ME in the UK in 2003 and Sophia Mirza died of ME in the UK in 2005. The only controversial thing about that was the atrocious way they were treated by the medical profession.” Doctor Speedy, a medical doctor, also ill with M.E.
In the 29 years I have been ill, I have known many who have died. My best friend with CFS/ME died last year… cancer… That we are even still here in this position BEGGING for research, BEGGING for a name change -now THIS is a silent holocaust. The toll that this disease has taken is terrible, but what is FAR WORSE is the IGNORANCE by the medical establishment -blood is on the hands of those who were able to help but turned a deaf ear. Deborah L.
“At least 1/3 of the patients I interviewed [in 1996] for Osler’s Web are dead.” Hillary Johnson, Journalist, February 2015
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…BEING TREATED AS A JOKE
“[Dr Derek] Enlander warns there are powerful vested interests at work in making ME appear a joke disease.” ibsgroup.org
‘Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 [note that date] for the benefit of various political and financial vested interest groups. It is a… waste basket diagnosis…’ hfme.org
“Chronic Fatigue Syndrome is like telling someone they have “Sneezing Syndrome… or… Afternoon Doze Syndrome… (Siesta anyone?)… This is a great game. We make a list of symptoms, find a suitable name – how about Rather Thin Thighs Syndrome? (I wish)… and there you are. Job done. Papers written. Professorships earned… But none of them – NONE OF THEM – are diagnosed… This is the tragic, unscientific nonsense of a situation we have found ourselves trapped in… Imagine that, under the noses of the world’s public and the international media, one of the worst medical travesties in our history has been quietly going on, from decade to decade… dragging even the best and most conscientious doctors along in its wake – not to mention tens of thousands of patients. And imagine that, like the maze at Hampton Court, there is a path connecting the signs and symptoms of this disease, and that some joker has come in the night and stuck up a collection of signposts pointing in conflicting directions, reading: ‘This way’, ‘That way’, ‘The other way’, ‘No – this way after all’ so that virtually no-one can connect with the real route, or find the centre of the maze, or discover the way out… this is the Alice in Wonderland nightmare we are in…” Jane Colby, Tymes Trust, UK children’s charity
Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (1996 + 2006 update) An investigative journalist report by Hillary Johnson, also ill with M.E. since 1986, revealing the history and mishandling by USA medical authorities of this epidemic ‘in plain sight’, which has now grown into a major, worldwide, public health threat.
A case for chronic denial – Hillary Johnson (op-ed contributor NY Times, 2009) The CDC ‘dismissed the epidemic and said the Tahoe doctors had worked themselves into a frenzy… Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.’
The damning letter discovered on a CDC bulletin board by journalist Hillary Johnson in 1986, showing exactly how serious the CDC took this illness after the Incline Village outbreak in 1984.
The CDC’s Failure to respond to 1996 cluster outbreaks (video) even though multiple patients’ later MRI scans showed lesion damage similar to AIDS patients.
Osler’s Web: interview with Hillary Johnson studies show that CFS is among the most severe of all medical diseases known to man… everyone is at risk, including teenagers and even very young children.
The awful disease Washington ‘forgot’ Llewellyn King, USA Journalist, White House Chronicle
“The CDC swept it under the carpet, despite the fact that their main raison d’être is to investigate and sort epidemics of new diseases before they take hold… Most of these people are too sick to stand up for themselves, to fight back… Tremendous suffering and horrendous problems… frequent misdiagnosis, as doctors use a “dustbin” approach that discards all the possibilities until they get to CFS…. medical death row…” Llewellyn King, USA Journalist, White House Chronicle
“I have gone blow to blow with these nasty bureaucrats at meetings inside the CDC, the NIH and HHS itself for 20 years. one of the worst crimes is that these people KNOW we are very ill, and they have lied… The Media… bought the disinformation campaign hook , line and sinker… We… want nothing more to get proper medical treatment and return to some semblance of normal…” Thomas Hennessy (now deceased)
An incriminating report of corporate collusion written by Professor Malcolm Hooper in the UK, 2007… mirrors the political and economic history of ME/CFS in the U.S.. The players may be different, but the outcome is the same. “The UK Medical Research Council has a secret file on Myalgic Encephalomyelitis (ME) that contains records and correspondence since at least 1988; the file is held in the UK Government Archive at Kew and cannot be opened until 2023… considers the involvement of certain UK psychiatrists who have proven vested interests in the propagation of this misinformation that is contrary to world-wide scientific evidence and that for two decades has resulted in the medical abuse of UK patients with ME/CFS…”
“We in Canada and around the world are affected by the decisions of the CDC because doctors around the world (and government) trust that the CDC is right… my doctors has wanted to give me anti-depressants when I have an infectious disease. I am also a nurse, and I hear many many nurses have got this disease, but no government official wants to talk about it.” Kati
“Tachycardia, neuropathic pain, polio-like muscle weakness – ME is no joke.” Jane Colby, Tymes Trust.
M.E. – the new plague a call to respect the voice of the ME patient, which we have seen denigrated, belittled and even vilified. For the truth of this devastating disease surely lies with the ME patients themselves.
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…WHAT RESEARCHERS ARE SAYING
A Plague on your house or theirs “The book [Plague] reveals massive dishonesty in science… [Dr Mikovits] was arrested, without a warrant, for stealing her own research notes… to send a message to all biologists: Keep your mitts off the subject matter of CFS… must have been orchestrated at a much higher level than that of her apparent attackers…”
Short interview with Dr Judy Mikovitz (less than 3 minutes) about her book, Plague (2014) | Dr Judy Mikovits – longer interview, with transcript part 1 | part 2 (2015)
Simmaron Research Dr Dan Petersen, one of the original doctors at Incline Village (M.E. outbreak 1984)
“I have gotten to know some of the researchers in the field and it is very clear CDC has, for reasons than aren’t clear, done whatever they can to stymie the whole possibility of an XMRV to CFS connection.” Don Follette
Severe ME patients spearhead their own funding for research when the National Institutes of Health would not (link removed).
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HOW PATIENTS ARE TREATED BY DOCTORS – TODAY – IN A MEDICAL FACILITY NEAR YOU!
David’s story – died age 17 (2013) “…He could barely move and lay in bed like a statue… almost every day a new low point was reached… found David on the floor, unable to move, in terrible pain… None of the medical professionals… ever heard of an illness called ME/CFS or was familiar with the symptoms… He died after two days at the intensive care unit as a result of an unstoppable brain hemorrhage. Before his illness he was a normal teenager… so seriously ill… couldn’t bear any sound, or the presence of other people. He couldn’t handle intellectual information… every sound gave him unimaginable pain. In the last two days of his life, many clinicians cared for David: First aid helpers, ambulance crew, emergency doctors, intensive care unit crew, neurosurgery OP-team, and a further anesthesiologists and neurosurgery intensive care unit crew – not one single person of all these experienced and well-prepared people had heard about an illness named ME/CFS before. Our dream is that in the future no ME/CFS-patient has to face the situation where the ambulance crew needs to spell the name of this illness into his walkie-talkie… [or] parents… threatened with the withdrawal of custody… [and] letters from the government office for youth welfare… Germany…”
“I have been housebound and often bed bound for 24 years with severe… M.E. The pain is unbelievable. All the medical profession have offered is contempt, neglect and abuse…. As far as I am concerned I died 24 years ago. I wish I had.” H.P.
“…I had cardiac symptoms – thought it was a heart attack. BP bottomed out in ambulance, I passed out, heart rate all over the charts. ER doc told me I was ridiculous and basically wasting his time…” Heather Tolley
“I brought the Journal of Family Medicine article in to a half dozen doctors and no one had any idea what to make of it. One doctor actually threw it on the floor… The most difficult aspect of this illness was the loss of identity. I went from being a Ph.D student at Harvard… to a person for whom writing a three-sentence email was enough trigger a cascade of inflammation in my brain that might take days to recover from… I thought I might be dying… might become a permanent state…” Jen Brea
“…in the absence of a cure, doctors are blaming sick children’s parents when their treatment doesn’t work.” Jane Colby, Tymes Trust, Speech at the House of Lords, London (2014)
“… Went thru about 15 docs… One dr during my searching period was an endocrinologist. I called and talked to his office staff, they assured me he could help… I waited couple mos to get in. Day of my appt he walked into exam room where I was waiting. My chart in his hand he asked me why I was there. “I need help, I’ve been dx’d with chronic fatigue syndrome and I need someone to help me manage this and get better.” He promptly said “I cant help you.” He took me by my arm, pulled my out of the chair, pulled me out to the front waiting room, dropped my chart in the trash can, and said “No charge.” to the front desk and walked away. I was embarrassed before the stunned office staff and full waiting room. I walked out, sat in my car and cried…” Sandy Adkins Sizemore
“In Malta there is not one single doctor who has the faintest idea how to treat the illness – and an estimated 800+ sufferers on this small island state…” Nicola
“…the definitions of the late 80s/90s were terrible and politically motivated and a large part of the reason we are where we are today [2015] which is (almost) nowhere. There is almost zero research funding. It is very easy to know nothing when you investigate nothing. Little is known by medical doctors because most are not trained in the diagnoses and treatment in this condition. That ignorance is dangerous…” Jen Brea
Dr. Berkwits asks on a doctors’ forum, “Ok guys and gals. It’s just us here. Nobody’s watching. You can be honest. Chronic fatigue syndrome is just depression right? I mean, I’m not a shrink, but it’s definitely just another word for MDD. Right?”
“This reddit comment [above] probably represents the standard medical view of this disease. I do not blame this doctor – I blame the lack of appropriate medical training…” Jen Brea
The most prevalent and Devastating disease your Doctor has never heard of Jen Brea
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…LOSING HOPE
“My sister… committed suicide… after suffering from ME for 19 years. She was in constant pain, always exhausted, and felt that no one bel[ie]ved that she was really sick. Yet, through all those challenges, she fought like a warrior… I will keep fighting for her…. I have a daughter, a brother-in-law, my best friend, another sister, a sister-in-law and a niece that suffer from the symptoms of ME. I will keep fighting for them……and for you” Sherone Taylor
“There was a statistic mentioned at the IACFE/ME conf… suicide was the 3rd leading cause of death (behind heart disease and cancer)…” Libby Boone
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WHITNEY’S STORY
(re: Whitney Dafoe, 2015) A sister objects: “How dare you sit behind your computer and tell me my brother’s illness is in his head… how can you look someone in the eye who is fighting for their life, who can’t speak, eat, tolerate noise, or any form of human contact and tell them there is nothing wrong with them. I haven’t been able to speak to my best friend and brother or hear his voice in years. I can’t hold his hand to console him while he lays there crying… we can’t do anything but wait, and pray, that one day scientists will figure out what is ravaging his body, slowly taking the hope out of his eyes…”
Whitney Dafoe: before… and after becoming ill
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KARINA’S STORY
Karina Hansen was a 24 year old woman in Denmark, severely ill with M.E. On 12 February 2013, 5 policemen, 2 doctors, 2 social workers and a locksmith went to Karina’s house and forcibly removed her from her bed and family home (i.e. medically kidnapped her), while restraining her mother. Karina was held against her will by psychiatric medical authorities until 17 October 2016 in an effort to make her ‘get over it’. She was given extreme dosages of antipyschotic medicine; forced to take part in treatment which could kill her; was appointed a state guardian to manage her affairs; was not allowed to go home or see her parents, as her condition continued to rapidly deteriorate. Her family and many friends all over the world fought the Denmark government for her legal release. Karina’s horrifying story drew the attention of Valerie Eliot Smith, a British barrister who has also been ill with M.E. since 1981, and she has written extensively about Karina’s story from a legal perspective. Karina eventually returned home in a far worse condition than when she was kidnapped and her legal battles continue. Karina was finally released from state guardianship on 10 October 2018. She remains extremely ill.
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JESSICA’S STORY
The World of One Room is the story of Jessica, and this video tells a little of her story. Jessica became severely ill when she was just 14 years old and in her own words she was… “in a position of a semi coma, unable to speak, move or even eat. I spent FOUR YEARS CONTINUOUSLY in hospital away from home in this position. I was 14 when I fell ill, 15 when I was hospitalised. I didn’t return home til 3 months before my 20th birthday. Be part of the change!” Jessica sat at her family’s dinner table for the first time in 9 years, Christmas Day 2014. Jessica also runs a children’s charity from her bed called Share a Star. Even though she is extremely ill, Jessica has an amazing zest for life and has since married and, amazingly, now has a beautiful daughter, Felicity. You can find updates about Jessica on her web site.
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WHAT HAPPENS TO PATIENTS… LIFE WITH M.E.
“It’s a really tragic thing — there are a lot of people who are severely mistreated… locked up… permanently harmed… parents whose children are taken away… become homeless. It’s just really hard for me to fathom the waste of life that this tragedy has created…” Jen Brea, Unrest Documentary
“…this virus killed my career and my business.” Laurence
“…lost everything. My husband abandoned me when I got too sick to make a living as a lawyer. If it wasn’t for my former doctor, who has it also, and friends, I would be in a lot worse place than an old single-wide trailer in an outlying rural area of Idaho. I was going to die…” Lois H
A view from the inside looking out by a Doctor who has M.E.
“…find a doc[tor] who treats these patients and spend one week in their office. You will be astounded at the degree of illness and misery (and I would hope a little shamed). You will hear patients describe how they cannot wash their hair, they cannot stand for more than 30 seconds, that writing an email leaves them exhausted, and on and on. I am talking about people that were PhDs, software engineers, venture capitalists, major real estate developers, entrepreneurs, you name it…. Several times a week I hear the same comment: I wish I had AIDS or Leukemia… virtually every patient has profoundly low natural killer cell function, about 80% have undetectable vasopressin levels, about 95% have mutations of the MTHFR gene (compared to 30% in the general population), and nearly every patient has documented abnormalities of the HPA axis. The real problem is our abysmal lack of understanding… not knowing the CAUSE of disease does not mean there is NO disease…” Dr. David Kaufman, MD
“I got this disease… 24 yrs. ago… I had a good size business. I lost it. I lost my home, my friends,family, and most of all I lost “me”… I am still sick all the time… doctors/ specialists… only know to treat what is within their specialty. I am a strong person, yet I often come home from such a visit in tears. I am tired of trying to explain “myself”. Trying to “explain” this disease. I am tired, wornout, financially in distress for my future… Even as they come up with retoviral drugs that show promise, I realize that I have no money left to afford them…. A great sadness… has replaced the anger as I wake up to each day… unless one suffers the many physical, social, and economic humilities of this disease, one will NEVER come to understand the DEPTH of our suffering.” Joyce
Joanne – a 14 year old girl with severe ME in Germany was forcibly removed from her mother and held in a hospital against her will since November 2013. As ME in most countries is considered a non-physical disease, at times children are forcibly removed from their family and put under foster care or in wards of psychiatric hospitals which dangerously deteriorates their health and well being. (I have been unable to find any further updates on Joanne).
A Hospital in Sweden is Threatening to Commit an ME/CFS Patient to a Psych Ward (2020) Holger Klintenberg Is a severe ME/CFS patient in Sweden who is being threatened by a local hospital with committing him by force to their psych ward.
The harsh reality of living with M.E. At the age of 22, I found myself too weak to even clean my own sick off the floor… Day and night soon became indistinguishable. When the crushing fog in my brain cleared even a little, it only allowed me to be more aware of the relentless pain in my thighs and chest, accompanied by a constant vice-like grip on my skull. The symptoms danced round my body to a rhythm I couldn’t understand… You may think that with such a serious disease I would have been offered extensive medical support. The opposite was true. Several GPs brushed me aside… Not only was I condemned to this tortuous illness, but my sentence seemed indefinite… the worst consequence of such a disease is the sheer loneliness of it. I cherished what little energy I had left to enjoy human interaction, often spending those precious grains of it on trying to appear as well as possible. I was ashamed of my ME. At times it has seemed impossible to make my family and my friends understand… [they] struggled to believe I was suffering from a real disease… It is hard enough dealing with this illness on your own, but even more so when those close to you struggle to even recognise that what you are going through is real. But, above all, complete silence was the most hurtful response… I felt I was dismissed and disbelieved… blamed… I was reduced to a body on a bed in what should have been the prime of my life…
“I feel like someone took my blood out and replaced it with cement… it’s just stripping away your humanity.” Stanford Medicine video of patients (Susan Kreutzer, 2:35 mark)
“…the pain, the loss of cognitive functioning that makes it feel that my brain’s moving through molasses… worst part is the hesitation I feel about mentioning the name of the disease that has ripped away my life… the crushing exhaustion… the reaction from people who have read about CFS in popular media… the careful non-reaction as their eyes slide away. Here’s a disease as debilitating as multiple sclerosis, congestive heart failure… or end-stage AIDS, and yet it’s not taken seriously. I don’t want to tell people what disease I have… because of a prevailing attitude that it’s something I should be able to overcome… no one would suggest that if I had AIDS or cancer or diabetes or MS…” G. Lyon
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“I would describe it like being a broken battery, where every time you try to charge me, you know, I maybe fill to 5 percent.” Jennifer Brea, ME/CFS patient
“Fatigue is what we experience, but it is what a match is to an atomic bomb,” Laura Hillenbrand, NY Times best selling author of Unbroken, ill with M.E. since 1987. Laura Hillenbrand Interview | Laura’s story: A sudden illness (pdf)
“So they think ME/CFS is some bloke yawning in a people carrier – right. They should show a car crash with a body on the road – not a clue!” Ian Connor
“The isolation is almost like solitary confinement. The whole thing is a nightmare.” Nancy Lamb (video)
“You feel so isolated. You can definitely feel like you are in a box and you’re watching other people live the life that you thought you were expected to have.” Stanford Medicine video (young man, 5:45 mark)
“…invisible, debilitating and demeaning disease…” Lisa
“…the greatest impact on me personally is the loss of my dignity… Other devastating diseases come with the worldwide understanding… a woman recently was suffering with cancer, the community organized daily hot meals for her and her family as well as daily visits. She was being hailed as a hero…” Gabby
“…Often with ME what you see isn’t what you get, you tend to see people only on their good moments and not the huge crash that comes after. A perfect example is this video of me talking about M.E on This Morning [TV show]… you didn’t see me traveling laying down… transferring out of my chair and whipping off my sunglasses at the last minute… or my immediate need to lay down after, and certainly not the 6 weeks it took to recover…” Vikki, Post Pals
Blake Edwards, husband of actress, Julie Andrews, described his 15 year struggle with this illness (up until his death) in the documentary, I Remember Me (2000).*
“…we weren’t sure what the heck was going on with me. I did not get a definitive diagnosis for 21 years!!” Vicky Z
“What makes coping with all these things unimaginably worse is having to do so with little if any support from friends and family…” Jodi Bassett, hfme.org (deceased 2016, age 40)
“… ME. Not many people even know (or care to know)…” Laura Vitale
“This disease robs you of your entire life . Your friends. Your family , your career but most of all your health…” Jane
“…as hard as the physical part of the illness is (I am mostly bedridden at this point), I find that the social isolation, lack of understanding, and utter scorn is often the hardest part to take…” Tammie
“I have been crying for an hour after reading this [insensitive comment by a doctor]… I was the most energetic person I know… I have raised 5 kids on my own.. I worked three jobs… I woke up every morning and went 100 miles an hour at life… IT IS NOT NORMAL TO SLEEP 18 HOURS A DAY… IT IS NOT NORMAL NOT TO BE ABLE TO LIFT YOUR HEAD .. IT IS NOT NORMAL TO NOT HAVE ENOUGH ENERGY TO HOLD YOUR OWN GRANCHILD… most days I think of suicide…. not because I don’t love my kids, grandkids and friends.. but because NO MATTER WHAT I DO… I CANT MAKE THIS GO AWAY !! I am not depressed… I AM DISGUSTED THAT THIS REVOLTING DISEASE THOUGHT IT WAS OK TO COME INTO MY BODY LIKE A TORNADO.. AND LEAVE ME WITH SHELL that I am supposed to suffer in silence with. I’m so sorry for the yelling… just so so upset….” Victoria Rose
“The stupid and cruel reactions to this disease have just stunned me over the years. Most of my old friends dropped me, some scolded me and said they would never speak to me again unless I ‘pulled myself together’ — which of course, I could not do…” Amy McLaughlin
“Sometimes though, I think the deafening silence from family and former friends is the worst. The ones who go silent whenever you talk about your illness, or haven’t contacted you since you got sick… Not only did they not help, they openly mocked my illness and living conditions.” Heidi Hayward
“…it’s heartbreaking to lose relatives and friends because they don’t GET IT…” Grace Ferguson Zarou
“…There have been several angels (and too many little demons!) but one of my brothers randomly sent me $250… that meant so much to me. I had humbly asked another brother who lives in ABUNDANCE for a small loan & he flat out said no. (Never had to do that before, lost my house, career, savings, EVERYTHING to this illness)…” Bon Marie Munier
When asking the question, ‘What is the most heartless or dismissive thing a doctor, friend, or family member has ever said to you about your illness?’ (link removed) One person responded after reading the 350+ comments, “…I got nauseous at the sheer, visceral ongoing abuse this represents…”
People with M.E. aren’t pretending to be sick. Instead, they work hard to pretend they’re well…. Hillary Johnson, Journalist
“…Patients attribute much of their mistreatment to the name “chronic fatigue syndrome,” chosen by the Centers for Disease Control in 1988…” New York Times
5 Things I didn’t know about health care until I got sick (a humorous look) “Imagine that police solved cases by dividing crime scenes up into physical segments and then not talking to each other about them. The guy who is looking for the murder weapon has no idea what the body looks like. The guy who is measuring the blood-splatter patterns… The crime-scene tech discovers… but doesn’t bother to tell the detective. This is pretty much what the medical system is like today… doctors have never been very good at saying, Wow, I really don’t know what is causing this problem… Instead, patients are often told that they’re… [the problem or that they’re]… faking it… ”
“This disease has wrecked my health… confined me to the house… poverty and isolation… forced me into bankruptcy… horrendous, barbaric treatment… Patients of the next mysterious, potentially expensive illness will have to go through this misery as well…” Jim
To suffering, add anger by Llewellyn King, Journalist
“…we are mad as hell at the CDC for playing games with millions of lives. We want them investigated… those involved to be prosecuted and put in prison. Why has this situation been allowed to go on for so long? When the public really understands that a dangerous Retrovirus has been in the nation’s blood supply for more than three decades… very contagious (I have it, my husband now has it)… and does destroy and then kill – there will be an uproar…” Sarah
[re: the Institute of Medicine (IOM) report recommending yet another new name for this disease in the USA – different from the rest of the world – to Systemic Exertion Intolerance Disease, 2015] “…Several individuals were even more critical… suggesting that the Institute of Medicine-initiated name change effort represented another imperialistic US adventure, which began in 1988 when the Centers for Disease Control changed the illness name from myalgic encephalomyelitis (ME) to chronic fatigue syndrome… for 25 years patients have experienced “malfeasance and nonfeasance”… This is key to understanding the patients’ outrage and anger…” Dr Jason Leonard, Oxford University Press blog
“…as an energetic, ambitious career woman I could not understand the suffering of my sibling who had succumbed to this invisible disease… That is until a post-viral onset of the same illness decimated my health and life nine years later. Suddenly it was all too clear.” Nancy
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TIPS TO LIVING WITH M.E. AND TO HELP YOU UNDERSTAND WHAT IT FEELS LIKE
A bouquet of spoons A clever, impromptu demonstration between two friends in a cafe when one asked the other what it was like to be so sick, living with chronic illness every day. The other grabbed up all the spoons she could find from the tables around them, and handed her startled friend a bouquet of spoons…
“My husband found me curled up on the floor, crying from pain, and silently curled up next to me and gently stroked my hair.” Chris VanB
“My hubby has to help me shower most days (when I can even manage them). The way he makes it a time of laughter for me instead of humiliation, which it could easily become, and has. There have been moments I’ve sat on the shower chair while he washes my hair and body and just sobbed at the whole situation, but with so much thankfulness that someone loves me enough to be so tender with me. He just does all he can to make it special time together and not about me needing the help.” Amy M
How to clean a bathroom with severe M.E. by choosing just one thing each day… and yes, it really can take 6 days
How to get your photo taken for severe M.E. Black Dress day
What is it like to live with M.E.? (video)
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CAUTION
While researching this article, I read MANY stories of people with M.E. who had some limited functionality, then ended up in bed for DECADES after participating in an exercise program recommended by their doctor, or by trying to push their recovery. It is VITAL that the patient rests as much as possible during their initial crash. This will give them the best chance of recovery, as rest (i.e. lying completely flat) puts the body in ‘neutral’ and allows the body to recharge and fight the disease as best it can by using its own severely depleted resources, while waiting for more medical research and hopefully, a cure. This initial crash period can last anywhere from several weeks for moderate cases; to several months for severe cases; or even years for very severe cases. And then the real recovery process can start to begin. Sitting up; getting dressed; talking; trying to concentrate on even the smallest task; reading a book; eating; putting your shoes on; standing up; going to the bathroom; brushing your hair; cleaning your teeth; checking your emails; getting a drink – anything – takes enormous amounts of energy when yours has been wiped out by an ‘atomic bomb’. It’s like someone has come along and turned all your energy manufacturing cells off while you weren’t looking. A leaky phone battery that needs constant plugging in and recharging. One little sms and you’re done. Or let’s say you need $100 of energy to get you through a ‘normal’ day and you only have $3 to spend. You need to constantly ‘choose’ where you are going to spend it. It is a fine balance between rest and gentle exercise. Do a bit; rest a bit; do a bit; rest a bit. Initially it will be: do a bit; rest a lot; do a bit more; rest a lot. This is a s.l.o.w.w.w continuum process in micro-steps which will hopefully improve over time and edge you more towards the ‘do a lot; rest a bit’ end of the spectrum. Provided you don’t ‘crash’. There is a trick to gently pushing it, followed by immediate rest, until the patients senses the next burst of energy has kicked in. It is important to gently push the limits, but the patient should be encouraged to ALWAYS read the signals coming from their own body and ALWAYS stay within their ‘energy envelope’. This is VERY important! This disease is unforgiving. A huge crash can set any progress back in no time flat or even into negatives – by weeks, many months, years, or even permanently.
To Those Newly Diagnosed With ME/CFS: Four Things I Learned the Hard Way
“Probably the most common treatment recommended to patients with M.E. is graded exercise therapy… This is a ‘treatment’ that can and very often does leave M.E. patients, including children, far sicker afterwards for months, years or longer (wheelchair-reliant, bedbound, needing intensive care etc.). It can also cause death. While it may help some of those with other illnesses very different to M.E., it has a ZERO percent chance of providing any benefit to M.E. patients.” ME – The Shocking Disease (written by Jodi Bassett, died 2016, age 40)
Time to abandon treadmill and bicycle stress tests that land patients in ERs and cardiac care centers: malpractice. Hillary Johnson, Journalist
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ME IS A SERIOUS, INFECTIOUS DISEASE – URGENT ACTION REQUIRED
Unrest Film is a rising groundswell of people – mostly sufferers – who are fed up and literally ‘rising up out of their beds’ to raise awareness about M.E. – taking matters into their own hands – and this is a good hub to find the latest information. Organised by Jen Brea, a doctoral student at Harvard before she became ill with M.E.
ME Action.net a new global community began in 2015 of people (mostly patients) fighting for awareness and started by Jen Brea.
ME-pedia.org a new wiki encyclopaedia opened as a knowledge base on the history, science and medicine of ME and CFS; launched by Jen Brea and the M.E. global patient community in December 2015
Phoenix Rising (M.E. forum) | CortJohnson (M.E. forum) Cort Johnson was also the founder of the Phoenix Rising forum
Voices from the Shadows a film to raise awareness about M.E.
“…the difference between M.E. and depression – and one which ought to be disseminated WIDELY in the medical community: Ask a patient what they would do if they became well tomorrow. A depressed person generally has lost hope and does not know how to answer the question; a person with M.E. on the other hand will give you a whole list of things! Blythe Battram
“The one thing I would like people to know about ME is there nothing you can do about it once you get it…Yes you can take medications, supplements, attempt to keep your body and mind in a healthy place, pray, scream, go from doctor to doctor searching after that bit of knowledge or that latest study; but unless there is a real cure for this horrible illness your body will have to deal with it… you are only treating symptoms… I’ve had ME 26 years… Unless the globe realizes that this is zapping incredible talent and costing money that could bankrupt governments and that people in power can get this disease themselves, we will never solve this.” pnr2008
“…I have to remind myself when people are hateful toward my situation, it generally comes from a place of fear. Our illness IS terrifying, because it can happen to anyone at any time…” Blythe Battram
“30 years of neglect. How many more must die? Due to a lack of research and funding, there are no FDA approved treatments and no cure; patients are in crisis. They need your voice.” ME Advocacy.org
“We who are ill can’t march or shout. We need the help of healthy people…This is an infectious disease epidemic… the life you save may be your own…” Kassy
May 12 – International Awareness Day for Complex Immunological and Neurological Diseases (C.I.N.D.) each year since 1992
“…the best way to get results is to organize a grass-roots campaign to push the Congress to allocate money for chronic fatigue syndrome research and treatment… It has to be somebody who has some ability to influence the purse… Congress doesn’t listen to scientists. They listen to people who vote for them. I was very involved in getting the autism bill passed… And it was two parents and a few of their friends who went down and lobbied on Capitol Hill…” Dr Ian Lipkin
“we have been left alone… maligned laughed at and humiliated… [you] spoke out for us with compassion and empathy… You can never know how much we ap[p]reciate this…” Barbara
“…this disease should be avoidable and curable. It isn’t and it could happen to you next…” ukxmrv
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2015… FINALLY… THE YEAR OF HOPE FOR M.E. PATIENTS?
End ME/CFS Project – study on severely ill patients (2014) World-renowned geneticist Ronald W. Davis, PhD, Director of the Stanford Genome Technology Center and considered one of the fathers of the modern era of human genetics, is leading a team of experts in a bold and new collaborative research project (privately funded) to unlock the mystery of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and end the suffering caused by the disease. Dr Davis’ son, Whitney Dafoe (in his thirties) is desperately ill with this disease and deteriorating. (See before and after photos of Whitney, above).
More than ever before, 2015 has been a year that has brought fresh hope to Myalgic Encephalomyelitis (ME) patients. The Institute of Medicine (IOM) and NIH Pathways to Prevention (P2P) reports confirmed the neglect and disbelief that have held the disease hostage for decades and strongly recommended action to improve patient care. Publications from Stanford, Columbia and Haukeland (Norway) Universities brought new insights into the biology. World-renowned scientists have joined the fight. Stories about severely ill patients like Ron Davis’s son have created more public awareness. And the Tuller series brought greater exposure to the concerns with the PACE trial and psychogenic theories.
What holiday gifts from @davidtuller1 @CoyneoftheRealm @profvrr Nobody is committing suicide this year, becuz you’ve taken us on. Bless you. Sammy Beach, Twitter, 23 December 2015
Dear PACE researchers (December 2015) Don’t worry, our aim is not to wreck your careers, or even to cause you distress. I know this may be difficult for you to believe, but this isn’t all about you. What it’s really about are the millions of people worldwide who have M.E. All we want is the truth. All we want is for you to hand over your data for analysis, or better still – as we can come to no other conclusion from reading this latest letter of yours – just come clean and admit that PACE has been deeply flawed all along and should be retracted. Then we can put a stop to people with M.E. being given inappropriate exercise and the medical profession can put its attention where it needs to be, where it should have been all along: into biomedical research to understand and find much needed medical treatments for this devastating condition.
It’s time for doctors to apologise to their ME patients (December 2015) this article was posted in response to a formal complaint and huge outcry from ME patients about this site’s previous coverage of M.E.. For too long the medical community has dismissed ‘Chronic Fatigue Syndrome’ as a mental illness which can be cured with therapy and exercise.
Jen Brea, who was doing a Harvard doctorate when she first got sick with M.E., has done a lot in the last 12 months getting the M.E. community up and working together. She is doing a documentary about M.E. and has organised petitions; started the M.E. Action site; talking to doctors and researchers (mostly privately funded – the USA govt allocates more funding for male baldness than this crippling and contagious disease affecting millions of people worldwide); encouraging others with health and energy to take up the cause; setting up a social media page where she keeps the M.E. community up to date on the latest; and encouraging everyone to fight back, in a kind of ‘spot-it-and-stop-it’ approach that has been successful for many other causes. That is how the ‘doctors should apologize’ article came about. So for the first time in decades, 2015 has been a hopeful year for the M.E. community. Because they are so sick, most advocacy has to be done online; or by people who care enough about them to do something about it. Patients are fed up with the ‘malfeance and nonfeance’ (legal terms) of governments and medical authorities worldwide – resulting in neglect and non-training for doctors; zero research (unless privately funded); and the ongoing abuse, neglect and death of so many patients – that the lid is now well and truly off the can of worms that authorities have successfully managed to keep stuffing back down into the tin since at least 1984. There is much deliberate misinformation and disinformation out there, but the M.E. community are now getting organised online and fighting back, literally from their beds. Some have been ill since 1956!
Dr Davis helped to raise the general profile of M.E. to a higher level during 2015. He is the world renowned genetics researcher who is desperately trying to find a cure for his desperately ill and deteriorating 31 year old son, Whitney. You can see another before and after photo of Whitney here. Shocking. And to show you how political M.E. is, and how desperate authorities are to keep the lid on it and keep everyone thinking it is ‘all in the head’, USA medical authorities continue to turn down Dr Davis’ request for funding, saying that he and his world class team of ‘three Nobel laureates and other noted scientists’ are ‘not good enough’ to receive funding for M.E., although they have no problem getting funding for other projects.
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UPDATE ON WHITNEY 2016
Here is Whitney with his mom, Janet Dafoe, in January 2016. “Ativan cleared Whitney’s brain fog few min! Smile! Hug! LAUGH! I told him about all his supporters/world. 1st time! Big smile!”
© Janet Dafoe
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MAY 2016 – #MILLIONS MISSING GLOBAL CAMPAIGN
The very first global social media campaign to raise awareness for M.E. was a huge success, as patients and their families joined together from thousands of homes and bedrooms around the world. The campaign was dedicated to the millions of Myalgic Encephalomyelitis (ME) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of this disease. The protest included donations of patients shoes as a statement of those missing from life or too ill to attend and received media coverage world wide. “Never in the field of modern medicine has so much harm been done to so many by so few.”
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UPDATE 2018: DEVASTATING NEWS
“NIH & CDC have now blocked funding for Myalgic Encephalomyelitis for 33 years and going strong. Centers, Intra-mural “research” exist to camouflage HHS’s genocide by blocking of research, care and treatment from scientific community. No funds to recruit for centers.” Deborah Waroff, Journalist, 2018
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WHAT CAN I DO?
YOU can help. Please… do your own research (a good place to start is to follow the links on this page); watch documentaries; follow some of these pages on social media; ask questions; sign a petition; pray; and tell everyone to help raise awareness. When chatting to my neighbour about this research, her dismissive response was, “Chronic Fatigue Syndrome…? Oh, everybody has that…” I have been around long enough to remember a time when everybody did not have that. So the question is Why? What happened in 1988? Did they realise how much of a problem they had and how much it might cost to fix it, so it becomes… problem? What problem? Money is more important than people? Follow the money trail to figure out who might benefit. Estimations widely vary, but I have read figures that suggest there may well be 20+ million people across the world with M.E. although these are only estimates. The exact statistics are not known.
Since initially writing this article in late 2014, more awareness about this issue seems to be building again during the early part of 2015, but authorities have been cleverly slipping through this one since 1988. It is time that more pressure is put on those in authority who can do something about it – and maintained until they do. Why do severe ME sufferers almost seem to go into a state of hibernation? Why does their body seem to shut down? Or is it a result of a body overloaded with toxic poisons? What part do inoculations play? Why has so little research been done on this disease? Why is it so difficult to get funding for this research? Somebody knows. Who or what is being covered up? And why? These and many other questions need to be answered by scientists and researchers.
And meanwhile, if you know a family who is directly affected, show them your love, understanding and support. This is a DEVASTATING illness that completely robs you of life. Your support may be THE ONLY SUPPORT they have. Remember, even if the person seems fine when you see them, you may be looking at their single burst of energy for that day (week or even month). Pray for them. Be kind and compassionate. Compassion, kindness and acceptance are the best gifts. Make sure they are okay. Offer practical help. Cook them a meal. Wash their dishes. Hang the washing out. Bring them some groceries. Vaccum. Give their home a spring clean. Let them know they are NOT alone or forgotten. If nothing else, just BE THERE and show you care. And although extremely sobering reading, the question has to be asked…
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Will someone in YOUR FAMILY be next?
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RELATED LINKS
MedicalKidnap.com USA hospitals kidnapping children for money, for research, or to cover up their mistakes??!! While related somewhat, but in this particular instance not specifically to M.E., I had to include this horrifying story of two gorgeous girls, Kayla (12) and Hannah (10) – and hundreds of others like them – who have also been medically kidnapped (April 2014); and are STILL being held against their will (October 2017); while their families are ordered by USA courts not to speak out, under threat… VERY distressing reading. A miracle for Two Sisters (web site).
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