I’ve been walking on the sad side. My mailbox is jammed with dozens of heartrending e-mails from sufferers of Chronic Fatigue Syndrome (CFS); a terrible disease that is little understood, little researched and hard to diagnose.
Chronic Fatigue Syndrome, which is known as Myalgic Encephalomyelitis in many parts of the world, mostly strikes people in their thirties and forties. The disease begins with flu-like symptoms which are often a precursor to a full collapse, often after exercise.
The disease largely disables the immune system; and leads to joint and muscle pain, cognitive dissonance, memory loss, dysphasia and problems with simple math. Sufferers are often confined to bed for months, functioning at a substantially reduced capacity, where the simplest tasks become monumental.
CFS-afflicted authors describe taking years to finish projects that should have taken months. These include Hillary Johnson, whose book “Osler’s Web” is about CFS; Laura Hillenbrand, who wrote the bestseller “Sea Biscuit” while struggling with the disease; and Deborah Waroff, who is writing a book about the Jewish hero Sholom Schwartzbard, but who has found the task dragging on for years, working as she can between severe periods of disability, confined to bed.
The human suffering of both the afflicted and those close to them is incalculable in its awful impact. One woman who e-mailed me wrote: “When I became totally disabled seven years ago, because I had not announced my illness previously, nearly everyone I knew figured the illness was in my head. They were aided and abetted with this sort of reasoning based on how the majority of the medical establishment and media had treated CFS. Like many with CFS, I lost all of my companions and my spouse.”
One of the most hopeful of recent discoveries is also generating a collateral fear. 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 who e-mailed me from Britain wrote that her husband contracted the disease after years of nursing her. Who, she asked, will look after them now?
A sufferer in Maryland wrote to me that she worries about her family. She and her husband decided to have a child. They were blessed with triplets – and the return of the mother’s disease. Now she worries for her husband and the three babies.
A man—one-third of victims are male, although the National Institutes of Health treats CFS as a woman’s disease–sums up the anger in the community towards the political establishment, and particularly the Centers for Disease Control which changed the name from Myalgic Encephalomyelitis, in a controversial action.
He wrote: “Washington didn’t so much forget – they were never told. 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. Now, because of the CDC’s wrongdoings, there are more than 1 million people affected in the USA and possibly 17 million worldwide. Most of these people are too sick to stand up for themselves, to fight back.”
Breaking down the e-mails, I find these commonalities:
· Anger at the CDC and, to a lesser extent, the National Institutes of Health and government in general.
· Tremendous suffering and horrendous problems with affording treatment; frequent misdiagnosis, as doctors use a “dustbin” approach that discards all the possibilities until they get to CFS.
· Anger at the media and others for not taking CFS seriously enough.
· The knowledge, with a cure rate of between 4 and 8 percent, that they are awaiting the inevitable in huge discomfort. They are on medical death row.
· Sufferers describing themselves as “living corpses.” Alone with their suffering, many commit suicide.
I’m not a medical writer. Writing about medicine has never interested me. But in a career of writing for newspapers, spanning more than 50 years, I’ve never received so much mail that has so consumed the thought process and torn at the heart.
There is a ghastly disease out there that cries out to be taken seriously, to get proper attention in the medical world, and to be prioritized along with the other big diseases claiming research dollars.
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Thank you for your excellent, concise but thorough, and best of all respectful description of the horrors we face.
We need something like ACT UP to demand action on this disease, but we who are ill can’t march or shout.
We need the help of healthy people. Anyone with just a little time to spend can help with the actions we have been able to muster; many are listed on this blog by another patient: http://lannieinthelymelight.blogspot.com/2010/10/advocacy-but-what-can-i-do.html?spref=fb
Please, any healthy person reading this, bless the good fortune of your good health, and give a little of your time to activism. This is an infectious disease epidemic and in demanding proper attention to the illness, the life you save may be your own or that of a loved on.
Thank you so much for this tremendous article.
we have been left alone for so long struggling to have our voices heard, by our governments and health professionals only to be maligned laughed at and humiliated.
Today you spoke so generously spoke out for us with compassion and empathy.
You did that for us today. Thank you so much.
You can never know how much we apreciate this although the mail you have been going through may give you some idea.
Congratulations on a powerful piece! Clear, directly getting to the heart of the matter. Thank you.
ME/CFS 27+ years
I am X+ and so is my partner . The goverment has been lying for years how serious this disease is . This disease robs you of your entire life . Your friends. Your family , your career but most of all your health. I went from being a normal healthy child to severe immune dysfunction and now completely immuno compromised. The co infections and opportunistic infections that this disease allows is frightening . Thank you for telling the truth Mr. King . I don’t have exhaustion that can be treated with a vacation and thinking positive thoughts . I have a retroviral infection that is harboring in our blood supply . If not for us patients do it for future generations . Ban ME/CFS patients from donating blood for life and treat the patients with dignity , respect and with real Care. AIDS patients now have a fuller life than patients with neuroimmune diseases . Please give us funding Now!!!!
Thank you for saying it.
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. So for the last 2 years 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.
Thank you for helping educate your audience about what people with ME/CFS face, not only in dealing with a horrendous, disabling illness, but in terms of attitudes in the medical community and the general public.
Thank you and bless you for speaking for us so eloquently.
Thank you so for this article.I’ve had this disease for a very long time and have been essentially home bound for the last 16 years Suddenly it’s getting nearly unbearable; it’s not something that you get used to. The way we have been treated by the CDC truly is a scandal, they can add to their list with Tuskeege, Guatamala.
Although I live across the ocean, I want to sincerelly thank you for this great article. I do hope that other journalists across the world will follow your lead. I live in Belgium where they also call the disease. I never found the courage to say that I’m suffering from the disease untill a few weeks ago. I has to stop and your article is giving me hope. Hope for a better future. Thank you so very much.
I contracted this debilitating illness at age 26, in the prime of my life.
Having achieved momentum in my career i was suddenly forced to come to the realization i would not marry, settle down, nor have a family of my own.
That was 24 years ago, and while i’m housebound, couch bound or bed bound most of the time, i pray for more research money to be allocated to this invisible, debilitating and demeaning disease.
Thank you for having the courage and the wisdom to shine a bright light on the subject to those who make the decision as to where research and grant money goes. You may just have helped save some lives.
I can’t thank you enough for writing this article. You speak for so many people who have been ignored and ridiculed for years. Please continue to help us by getting our voices heard.
My sincerest thanks.
Thanks so much for your pinpoint comments, very well written and sums us up well.
God Bless you for writing this.We are Human Beings and our rights have been abused badly.We have been treated very badly by everyone.
I have been ill since 94 severely.I have lost friend`s,family member`s will not support me.My husband walked out on me in May and left me homeless for two months.I live in a horrible place now full of criminals,drug addict`s,rapist…. now.
This has ruined our lives or what you may want to call our life.In bed with horrible pain 24/7…365 days a year.Never stops.
We need action.This is spreading faster than you all know.Research funding, Clinical Trials and lot`s of them.Every state needs to start testing the blood supple and us.
Please help us all we want to Live a good Life.
Thank you for continuing to write about this dreadful illness and keeping it in the public eye. We need more research funds; we need more doctors trained to diagnose and treat the illness; we need more benefits; we need the US to take the lead and encourage other countries to follow. 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. This isn’t just a US problem; it is world wide.
Thanks from a dutch patient. I hope Amerika will lead the way.
God bless you for writing this article. My mom brother, Sister and I have been disabled to varying degrees for 23 years after an initial viral insult. We basically never recovered and have been abused by the CDC and forgotten by our government.
Thank – you for this article.
This illness is spreading – government is taking too long to contain it, the same way it went with HIV There needs to be RESEARCH and clinical trials now, not cover it up any longer
You are the first man to make me cry in years, and I have had CFS for 30 years. Thank you for a rational voice in a time of extreme denial.
I became ill in 2002. It took seven years to receive a diagnosis. In those seven years I was humiliated over and over again by doctors who told me I was depressed or stressed out and just needed a vacation. Never mind the fact that I was only in my early thirties but did not have the strength to get up my stairs, stand in the shower or hold my hairdryer up long enough to dry my hair. Every article like this is a huge step forward. Thank you so much for taking the time to write it.
You have written an honest description of what it is like to suffer from ME/CFS. I have suffered with this illness for 24 years, and now I have tested positive by culture for the XMRV retrovirus. One would think having a retrovirus similar to HIV and suffering from a devastating illness would get some respect from the government, but it does not. The CDC has managed to bury those of us who suffer with this for 25 years, and now it looks like they are trying for another 25. If good journalists like you continue to write honestly, maybe we’ll finally get some NIH research into the XMRV retrovirus, which may save us from another 25 years of living death.
Patricia Carter
http://www.mecfsforums.com
You are one of the few journalists who actually feel our pain and suffering. Thank you so much for your compassion and of course for keeping this terrible disease in the public eye. The public has much to fear from this, and need to help us stop the madness once and for all. To this end, patients from all over the world have aligned themselves to do something about it.
With your permission, I ask all who care to go to:
www/mcwpa.org
and learn all they can about the danger the public is in from ME/CFS.
Again, kudos to you and all who have compassion and support our cause for legitimate research, clinical trials for treatments, and hope for our futures. We need it NOW: patients are dying from neglect!
Thanks for writing this. I’ve been feeling pretty misunderstood. I never realised there were so many ways and levels to be misunderstood on and actually things are pretty easy for me compared to many people with ME/CFS. Your article describes a disease and experience I recognise and I really needed that tonight. Thank you.
My daughter has this disease and it was diagnosed rwo years ago at 17, but she had it since 16. I have never gone through such a trying time in my lifewith the medical
profession and with her school. Even though she was diagnosed by A professor at Children’s Hospital iti s treated as if it is a quack disease and no one has a good medical treatment for it. It is as if we have been disagnosed and thrown to the worfs. AS a nurse I am horrified that such a disease exists and tha tthe medical profession can be so lax. I am horrified and shocked.
Dear Mr. King, I have watched your program on and off over the past 25 years or so, and have always found you thoughtful and erudite, without being stuffy, and you possess a sly wit that almost always comes with a superior intellect. But, it is your excellent breakdown of the mysterious illness called Myalgic Encephalomyelitis around most of the world that has been “swept under the rug” at the CDC as you so accurately describe, for the past 3 decades. the actions of our government have been immoral, illegal and unconscionable by any stretch of the imagination. 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 early and often to their superiors. I compared this condition to the newly sick gulf war veterans from the first gulf war on Larry King Live, back in May of 1991, when there were about 5,000 sick veterans. Now, there are more than 285,000 sick veterans. More than 1 in 4 of our brave veterans are sick with these debilitating symptoms. We can not even protect our soldiers who fight our wars. the few soldiers who DO get disability, get funds with diagnoses of MCSS, FMS, M.E. and CFS. Just like Pravda before them, Our Pentagon wags said “There is no ONE, NEW and UNIQUE illness known as Gulf War Syndrome”. What does the Press do? the next day they wrote “Gulf War Syndrome does not exist!”. The Media establishment bought the disinformation campaign hook , line and sinker. Gulf War illnesses were NOT one condition, they were NOT new, and they were NOT unique!
So, the PRAVDA technique worked! it was a technically true statement that told a BIG LIE! The Pentagon’s fancy, three card monte studies enabled it to say “NO gulf war syndrome” when in fact more than 25% of their veterans were sick. larger percentages than WWI, WWII, Korea, or Vietnam. These overlapping syndromes leave millions of us so ill that we can not even take care of ourselves for simply daily tasks. I say it is like grinding the teeth down on the HPA axis. Our autonomic nervous systems are constantly misfiring. Our bodies can never tell correct time. we are too hot, or too cold, too dizzy, to nauseous or in too much nerve and muscle pain to function. My friends like Hillary Johnson turned in more than 2100 pages of manuscript after a decade’s worth of work on “Osler’s Web”. Poor Laura Hillenbrand, wrote one of the most gripping true stories of an undersized and lame horse, ridden by a one eyed jockey and owned by wealthy car dealer who had lost his favorite son. It took Laura a decade to research her great book and she had to write the entire book lying on her back, with a legal paper and pad, writing one sentence at a time, while the room spun in nauseous circles around her. this is truly a modern plague.
I thank you from the bottom of my heart for telling the truth about this plague, with a clear and open heart. We are not a bunch of meretricious valetudinarians. We are a group of million of people worlwide who want nothing more to get proper medical treatment and return to some semblance of normal for whatever time we have left on this beautiful earth. You are a credit to Washington Journalism. Sincerely, TMH
Thank you so much for sharing this – you did a brilliant job of putting in to words the emotions we all feel. These things need to be said and the powers that be need to listen.
Whatever happens with ME/CFS, there will be another disease, just like it, in the future. I feel it is so important that even if and when we do get answers, we don’t just walk away and let it happen again.
I know this takes a great deal out of you when you have precious little to give of yourself, so you are a true hero in my eyes. We would all be lost without people like you!
Mr. King, thank you so much for your compassionate and heartful prose. You’ve captured our plight. We are truly grateful. Thank you.
“Medical death row” is a very accurate description. This disease takes EVERYTHING from us, and then insult is added to injury because we are not afforded hospice care, insurances often don’t cover CFS, and doctors treat us as if we were malingerers. Often this translates into family feeling the same way. Thank you, this article is an important and well-done piece of work!
God bless you and thank you!!!!!!!!!
A brilliant article, Llewellyn, well deserving of printing in the hard copy paper. It’s all so true. The Gulf War veterans all have basically the same disease – possibly the retro-virus found by private researchers in Nevada – and which almost certainly came from the crude vaccines they were given, as many of the sufferers were never deployed.
I feel flattered that you quoted from my Comment, calling me a “Man”. Yes I am angry. Where have all the “ethics” gone? the people who try to find out the truth, the real cause of the disease. OK, they’re all in Nevada – NOT working under the CDC’s ugly shadow. And I’m not a “meretricious valetudinarian” – ” I’m actually a “retired veterinarian” – it sounds a bit the same. But this virus killed my career and my business.
“Medical Death Row” is a very apt description. Thank you so much for this compassionate piece.
It is so exciting for our community to see someone take on our cause who could make a difference for us. We are suffering beyond human understanding. Doctors have compared the most ill as being as sick as end stage aids patients. People lose hope and commit suicide. WE must have a cure. Please keep bringing attention to ME/CFS and God Bless You for doing so.
I have studied Grief Counseling, Pastoral Counseling and Psychology, trying over numerous years to finish a 60 credit Master’s Degree program. I wanted to be able to help other suffering people, to be able to hold others’hands someday . . .someday when I would be well enough from this terrible disease of CFS that has stolen my life from me. I got this disease after having the one and only “flu” shot of my life. I got the worst flu I ever had, and I never recovered from it. That was 24 yrs. ago. I guess I am past the “mad” or “angry” stage. I just feel very sad. I am now 60 yrs. old and when I allow myself to “feel”, I feel all of these findings are coming too late for me. I had a good size business. I lost it. I lost my home, my friends,family, and most of all I lost “me”. I feel tremendously sad that I can never bring to the world all the beautiful gifts God has given me. My intelligence, My love for people, my compassion for others, my gift for helping others heal. I know that it is there within me. Yet, I could never hold a job that would expect me to hold a regular schedule. Impossible. I am still sick all the time. I go from one cold to the next, averaging two a month, sinus infections, resistant yeast infections. My immune scores are all below normal. I joking say that my “social life” is going to the doctor’s office! This disease is “eating” at my brain – – lesions and a seizure disorder. I have super sensitivity to chemicals. Allergies have turned to asthma. Everything is worse because of my below level immunity, seizure disorder and fibromyalgia.I see different doctors/ specialists, who I try to convince that this is all one disease and has to be seen that way. They 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. I have lost all chances of having a family, a social life, of the simple pleasure of going to the beach that is 5 minutes from my house. I just do not see a future for myself. Even as they come up with retoviral drugs that show promise, I realize that I have no money left to afford them. I gave up being angry. It has been too long. A great sadness that can not be treated by any antidepressant has replaced the anger as I wake up to each day. It is a never ending battle of “One Day At A Time.” I thank this author for recognizing the suffering of ME/CFS patients. Yet, unless one suffers the many physical, social, and economic humilities of this disease, one will NEVER come to understand the DEPTH of our suffering.
I am in tears. In all the years of my struggle as a sick mother with ME/CFS and raising a son with ME/CFS , i have never heard any compassion for us, from anyone.
Thank you
Karina (Aruschima)
Thank you so much for acknowledging us by writing this and voicing your compassion. It’s so rare, and appreciated by so many. You will probably never know how much.
Thank you so much for highlighting how badly we ME sufferers have been treated and in the UK the General Medical Council are now targeting the few doctors prepared to try and help us. What is going on? I am one of the relatively lucky ones who has been helped and I now try and fight to get help for fellow sufferers having seen for myself the terrible suffering this disease brings and the lack of help available. We are in the midst of a terrible battle right now as one of our much loved doctors is hauled before the GMC. WHY one has to ask? Her crime – making people better
Thankyou so much. This is the most compassionate news article I have ever read about the horrible affliction that is known as ME/CFS.
People like you give us hope.
I just want to thank you so much for writing this article. I have had ME/CFS for over 6 yrs and 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.
Currently, I am at a very low point in dealing with this, and reading your article brought me a little hope that maybe there are still people out there who are actually listening, trying to understand, and even treating us with compassion.
Your term “medical death row” really resonated with me, as that captures the way that my life feels better than anything I have heard thus far.
Anyway, like I said, I just wanted to thank you for writing this article. It is truly appreciated.
Thank you thank you for this enlightened article on ME.If only the “establishment” had a similar attitude. Why in this the 21st century is this being allowed to happen? Have we not learned from past mistakes in MS and HIV. Viruses are constantly evolving yet research is not keeping up. In some countries -like the UK- little is being done to address this serious problem. Heaven help us all!
Thank you for listening to us and for your undertanding of the hell that we all live in daily.
Are you also aware that we die on average about 25 years earlier than normal? That early death age would be about 55 years old. This actually is not a horrifying thought for me since it does allow me to believe that this suffering will be over for me sooner rather than later. And I have yet to hear any ME/CFS person really complain about our life-span loss of 25 years, probably for the same reason that I just gave – it’s just a faster way out of all of this pain. Pathetic, isn’t it?
And yes, we are mad as hell at the CDC for playing games with millions of lives. We want them investigated and we want 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, that this Retrovirus is very contagious (I have it, my husband now has it) and that this Retrovirus probably causes many diseases and cancers and does destroy and then kill – there will be an uproar that will bring down the CDC and damage the rest of the US Federal health organizations very badly. As it is, no one trusts the CDC anymore. Not after hearing about the experiments done to different groups. Not after hearing Dr. Collins state that there is another 40 “deliberate infections” that are being investigated. Not after knowing that all the viruses that the CDC faked out and hyped to get funding for – Swine Flu, West Nile, SARS? Give me a break. And yet the one real virus that was disabling and deadly was the one virus that the CDC refused to deal with even though they KNEW about in the 1980’s. Instead, CDC destroyed replication and then had NIH kill off further funding for any Retrovirus research (except HIV/HTLV) until the Prostate Cancer guys and WPI picked the research back up. When SOON the public finds out ALL of this dirt on what the CDC has done and not done, God help them. Funding for the CDC will be cut to the bone and oversight will be strangling – as it should be.
The numbers of sick cited are between 1 million and 4 million. However, those numbers are most likely very low given that the CDC did not do their job and just phone- called people and asked them if they were tired. The real numbers I expect, will be signifantly higher because we don’t have the trained physicians to diagnose the sick. Instead of seeing ME/CFS they see depression and other inaccurate illnesses.
The number of men with ME/CFS will be shown to be much higher too with accurate reporting. The CDC made sure that this disease was made into a “neurotic middle-age women’s syndrome” due to menopause, bordom, pick a demeaning reason. But the sick men are out there and their numbers are probably about equal to the women’s numbers. When my husband first became sick six years ago he was diagnosed with “burn-out”. There is no medical diagnosis called burn-out. The doctor was NOT going to give him the true diagnosis of ME/CFS. He was a man and men don’t get ME/CFS even if they have been living with someone who had been very sick with this disease for ten years. My husband was a poster child for ME/CFS and yet “burn-out”? I almost threw a punch into the doctor’s face for that one. Really.
Please continue to write about us. We need help badly. And, because of this newly discovered Retrovirus family, the rest of the world needs help now as well. If 7% of health controls have the Retrovirus in their blood this would equate to over 20 million Americans who have not YET gotten ME/CFS, other diseases and cancers. Now add this “not yet sick” 20 million people to the more accurate number of “now sick” ME/CFS people (we don’t know the diseases/cancers this Retrovirus causes so we can’t count those people) – and you may be looking at numbers of 30 million, 50 million, who knows how many million – sick because of a Retrovirus that the CDC killed off and covered up for 30 years.
The American public and the rest of the other countries who also played games with the CDC/CFS program people (William Reeves and others) are going to go into a frenzy of rage.
God help the CDC and other US Federal health organizations because only “God” can help them at this point.
Thank you for your wonderful article, shedding light on this devestating illness, especially the additional stress people with CFS feel through misdiagnosis, lack of research funds, etc.
I am a peer counselor for people with CFS and Fibromyalgia. I hear many stories that are consistent with the commonalities you enumerated.
In addition I frequently hear PWC’s and PWFMS’s being inappropriately dropped from disabiilty payments. This action seems to be driven by the financial interests of Long Term Disability (LTD) insurance companies. There are doctors who sell their services as “expert witnesses” when an LTD challenges a PWC’s case; this is all perfectly legal, except that the “expert” doctors give a very slanted (often inaccurate) view. In North Carolina alone, I have seen several reports written by two doctors (Nortin Hadler and Gerald Aronoff), which are full of inaccuracies (sometimes including outright lies), the result of which legitimately disabled PWC’s lose their payments. Aronoff did this in Massachusetts til he lost his medical license there, whereupon he moved his scheme to North Carolina.
This problem is not confined to the USA. In the UK, the “Wessely School” (led by Dr Simon Wessely, a psychiatrist at King’s College) has set up structure to put disabled PWC’s off the UK’s version of “workmans comp”.
Thank you from the UK for this thoughtful, balanced article. Hving suffered for 25 years+ with this dreadful illness and now having to watch our youngest child (12 years) being diagnosed with CFS too our world has been turned upside down. We are angry that research has been so slow and even more so that we are told its all in our minds. How dare they say that to a young child that up until a year ago was just a normal child- he wants his life back but there was little help. Thanks to the Whittemore Peterson Insitute things are set to change. For ME sufferers a Retro virus is something to celebrate – thats shows how desperate and ill they really are.
This is a very accurate and touching piece.
You have put into words the horror of life with CFS in this society. Please write more- The brighter the light we can shine the quicker our suffering will get serious attention from the medical establishment.
Until we do, we’re invisible and doomed.
Thank you for helping to tell our story and be our voice. I have had ME/CFS for 14 years. I also have tested positive for XMRV. I cannot walk, talk, stand, or speak above a whisper. I have gone from a well-educated, highly active, ambitious young woman to being bedridden and requiring assistance with all aspects of daily living. This is a devastating disease, and the complete lack of action by the CDC in the last 30 years is both astounding and maddening. It simply cannot be tolerated any longer.
Thank you so much for reporting on our devastating, disabling illness. Like another commenter, I wish that journalism of this quality was appearing in national print and TV media. In the UK, we’ve had a virtual media embargo on the link between CFS and the XMRV retrovirus. The absence of investigative journalists who should be all over this story continues to amaze me. Thank you again.
Wow.
Thank you sir.
I’m one of the luckier ones with CFS. I have dealt with it for 18 yrs, but have been recovering for the last 3 and almost have the semblance of a life back. Not because of the conventional medical community, they have been no help to me. A naturopath is making the difference.
What you’ve written is very encouraging to me. The more so because it is so rare to see something like this.
Which adds a poignant twist. That a piece of writing like this should be so rare … highlights the arid desert media-wise and government-wise we’ve been facing for decades.
You are greatly appreciated.
Brilliant article. Deeply appreciated. Thank you for taking the time to address this growing “plague” that has robbed many of vitality, health, passion, career and even family. I have lost a decade of my life to this dreadful disease, and exist now as a mere shadow of my former self. I remember as an energetic, amibitious career woman I could not understand the suffering of my sibling who had succumbed to this invisible disease; it all seemed to me a bit too hard to define. 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. Thanks again for your article, a rare ray of light for a dismissed people.
Thank you.
Thanks for your article and helping to bring to light this horrible illness. I have been sick for 7 years, started with Mono, immune system never bounced back!
I am still “lucky” enough to be able to continue employment. Although, my FMLA has expired because I had a flare up last fall, and was off the books for nearly 3 months!
Luckily I have short term disability, but it still really hurt financially, then and NOW!
I am 1 of the minority males, I just wish people had more empathy for our position. I know I have it for others! The poor 25% or so who are disabled in bed!!
Thanks again for your continued coverage!
GG
I also want to extend my thanks for a thoughtful and well written explanation of an illness where the “blame the victim” mentality seems to be the rule. I was clinically diagnosed about 7 years ago with CFS and then Fibromyalgia (often seen as related) about two years later. As a man, I really had difficulty finding out much about the diseases and especially how they effect men. After the Whittmore Peterson Institute published their findings I decided (against the advice of several doctors I see) to be tested for XMRV and found I was positive. My biggest fear, as cited by some other respondents, was whether I was contagious and would make my family or friends ill. A local immunologist literally laughed at me when I brought her the Science article and other scholarly data on the retrovirus and told me “laymen shouldn’t read research”, as though I were an idiot. 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. Thankfully the FDA finally intervened this past summer and at the 1st International Symposium this past September additional groups have come forward showing a retroviral link to both XMRV and the broader category of MLVs (Murine Leukemia Viruses). Now the key is to get the ball rolling until a causal connection can be made. As one researcher said, then the pharmaceutical companies, whose advertising budgets exceed the NIH’s research budget, will start looking for real treatments. That is the hope many of us have for trying to regain our lost lives.
THANK YOU. You, surely are a human being with a generouus heart.
A very thoughtful article, Mr. King. Having been put out of commission 11 years ago and nearing 65, I’ve lost my most productive and better-remunerated years (in Canada) and this crazy disease has already made me poor, but will be a worse pauper at 65, with less than 1 000 $ a month with which to live. In Québec, there is presently a Commission on Dying with Dignity and I am presenting my paper this Tuesday October 12. There will be no results because Québec cannot legislate on decriminalizing euthanasia or assisted suicide: it is just pulse-taking. Many presenting groups are against euthanasia and they deal mostly with cancer patients who can be offered palliative care when nearing their end. We would need palliative care now. Actually, we live with more pain and disability than cancer patients.
Is there some kind of embargo on honest reporting of a worldwide plague? I’d like to know; there are so few compassionate and honest depictions of ME/CFS in the news, and I have not seen one word on the National or my local newscasts about XMRV.
We patients intend to do something about this as soon as people donate enough: we, the ME/CFS Worldwide Patient Alliance (mcwpa) are preparing Ads to go into the Washington Post very, very soon! They will bring this devastating illness to the public, will warn the public of the danger they are in, and will demand clinical trials of medication for all patients with XMRV+, ME, CFS, and other NeuroEndocrineImmune Disorders (NEIDs).
If anyone wants this, I suggest:
http://www.causes.com/causes/511536
http://www.mcwpa.org
There are never enough ways to thank those like you, Mr. King, for the service you have done for ME/CFS patients worldwide!
Will a kiss and a hug do? XXOO
Lleweellyn,
I cn’t tell you how grateful I am that you have paid attention to ME/CFS, a horrible disease. I choose to call it disease even though the medical profession has not dignified the condition with that term yet. This is the disgrace – that so many people can have so many horrible symptoms and not even be taken seriously. Some of us, such as myself, are getting worse, some are dying and we don’t even quite know why. It is only the very exceptional doctor who pays attention to it.
Much damage has been done to us by some members of the pshychiatric profession who are hell-bent on proving that it is all in our heads, there’s nothing wrong with our bodies that some exercise and ‘right’ thinking won’t cure, recommendihng harmful or useless therapies.
Their insistence on their confined terms of reference is breathtaking. They tend to go round and round finding confirmation of
their beliefs without ever examining whether their whole paradigm might be out of touch with physical reality. Apparently living in a separate bubble of their own making, exploiting gaps in medical knowledge, they ignore all evidence which might contradict their position. Cognitive dissonance is surely at work here. After all, if
they accepted such evidence their whole career might be at risk. There is great scope for social, psychological, and economic analysis of the behaviour of these professionals. At present it is the
patients who are searched for behavioural aberrations and are forced to bear the consequences of whatever label professionals choose to stick on them. As a result, they are often abused, neglected or patronised. The burden is on the patients, or a few dedicated researchers, to prove they are not frauds.
Appropriate research and validation of the condition are deperately needed and I thank you for your support.
Susanna
Dear General Clark,
I was stricken with CFS only a couple of years ago. I have been an RN for 27 years and I lack 5 classes having my Master’s degree in nursing. I am housebound and almost totally bedbound. Before this I worked full time, sometimes 2 and 3 jobs and went to school. This is a devastating illness that will rip your life right out from under you. I find very few healthcare professionals who know about this syndrome, much less want to treat it. I have been laughed at and scorned by my doctors and yet I must continue to push on knowing that someday there may be a cure. My son is getting married in 2 weeks and it is a 6 hour drive from my home. I hope I will be able to attend the wedding. I must plan on about 3 weeks of bedrest afterwards to deal with the repercussions of activity. I was denied SSDI and just went before an administrative law judge who now has my fate in his hands. I am praying that he is not like so many others who laugh it off. I want to thank you for your concern. It sounds genuine. I know my spelling is bad but I have a condition known as “fibro fog” because I have fibromyalgia as well. Please forgive the misspelled words. God bless you.
Thank you,
Jane Farmer, RN
Why is it so difficult for the medical and scientific establishments to accept that some illnesses are caused by unidentified viruses that have yet to be found? I find it astonishing that for the past 20/30 years the viral link with ME/CFS has been repeatedly raised by bona fide research scientists and yet has always been discredited as, though the effects of the virus are clearly documented, the virus itself remains unidentified. When I studied science at University the whole point was to discover the unknown, rather like black holes, the effects of which are seen but are physically unproven. Just because you can’t find it yet, doesn’t mean it doesn’t exist! In my view it is a sad indictment on the scientific and medical profession that ME/CFS patients have been left for so long being treated as if suffering from Freudian hysteria rather than helped and treated like someone with Parkinson’s or Diabetes. It is no joke to live for years with a mentally and physically debilitating illness, as well as having to constantly justify yourself as being genuinely ill. Perhaps validation, and who knows even a cure, may soon be on the horizon and all of us silent sufferers of ME/CFS can start to live our lives again which would be nice.
In light of various people suggesting that we “caught” the illness from the internet, or that it was some “yuppie flu” I will add that I first got the disease in 1958. It was mild enough that I did go to school though was out about as much as I was in; was accepted by the two seven sisters colleges I applied to & wen to one. I had a peculiar time – my brain was so capricious I had to write an essay exam for Calculus II – I was clear on the theory but couldn’t add or subtract for the life of me. No I didn’t catch this on the ‘net, no I could hardly have been thought to be a yuppie when I got it, no I’d never heard of it before I got it. While obvious there was something odd about me, no one made sense of it till 1994. While each of us is only an anecdote, one day people will wonder why this illness became such a contentious issue.
Thank you for calling attention to this condition. My symptoms started when I was single, so it was a great shock to me to hear from the doctor I saw a few weeks after getting married that they were a result of “resenting my husband” and an even bigger shock to learn a dozen years later that they were caused by my recent divorce and could be cured by getting remarried. !!!!
The doctors simply could not get their heads around it that the cause was a severe virus that I had in February 1987. It had nothing to do with my marital status, nor with a desire to be a housewife (I hate and detest housework! I much preferred performing my career.)
More than ten years after collapsing at work, I’m still fighting for Disability benefits, because of the perception that my only problem is post-divorce depression (which apparently pre-dated the wedding if you go by onset of symptoms). My medical records have been so filled with false statements (doctors writing down what they want to hear rather than what I actually said — if you believe them, I quit my job and haven’t worked since the day I got the diagnosis, instead of struggling to work another 12 years full-time and a decade after that part-time) that it is impossible to rely upon the medical records to support my claim that I am disabled. The doctors do their best to portray me as NOT disabled … even at the point that I was spending 23.5 hours a day horizontal to avoid passing out.
Mr. King, thank you so much for your compassionate and heartfelt prose. You’ve captured our plight. We are truly grateful. Thank you.
Thank you. The suffering is real, we need help! I’m looking forward to your writing making a difference. Also, Thank you to human beings living with ME/CFS for finding the strength and courage to speak up. understand the difficulty of sapping such energy especially if no one is listening nor caring to know about the invisable pain and destruction of lives. Some days I feel like I’m dying and no one can see it. Like many have already said “Living Corpses” Every morning I wake up to Death. It’s hard to get out of bed… but my heart and soul won’t give in, I grin and bear.
Wow, man. Good article. Thanks. This definitely can be a debilitating disease, and we definitely need awareness and help.
Dear Mr. King,
Thank you for understanding this terrible disease so well. I have been ill since a 1985 outbreak and seen the best doctors I could, but have become progressively worse. Without a wonderful husband and daughters and their families, The Disease would be impossible. There is hope with the anti-retrovirals and the research of the Whittemore-Peterson Institute (WPI) at the U. of NV School of Medicine. The political challenges have yet to be overcome.
Diolch yn fawr,
Carol Olsen
http://cfschronicles.blogspot.com/2010/10/llewellyn-king-burst-our-bubble.html
I have written a brief blog entry on you Mr. King. I hope you find it complimentary. Thank you very much for your help in our fight.
Sincerely,
Heidi Bauer
Thank you for speaking for the huge numbers of us who who have been suffering with this illness for decades.
Thank you so much for bringing our semblance of lives to light. It is a sad existence at best for most of us. As a parent afflicted and watching my son deal with this illness as well, it is very difficult.
Thank you so much for writing this piece. We have been victimized many times over, not only by having the misfortune of contracting a disabling disease, but also by the indifference and even the hostility of the very government agencies that are supposed to help us, and by ridicule and disbelief from doctors who are supposed to help us, or at least to “do no harm.”
Seldom do we see anything in the media that reflects the reality with which we live. The arguments always proceed from a false premise — that we are not really sick, we’re just burnout cases, or depressed, or extraordinarily wimpy. So thank you for actually listening to and writing about what patients have to say about this illness, like a real journalist, instead of just reading some government propaganda from NIH or CDC.
I cannot describe how heartwarming it was to see someone of your stature recognize what those of us with M.E/CFS are suffering and I thank you from the bottom of my heart.
The excitement over XMRV gives me hope where before there was none. Thank you for taking time to profile this illness and helping to create awareness.
Thank you so much for this article!
I just finished watching your White House Chronicle program on Chronic Fatigue Syndrome and then came across this column. I doubt that you can understand what your sympathy, compassion, and attention means to a CFS sufferer like me. I’m moved nearly to tears.
I have been ill with CFS for about 9 years and largely housebound for the past 7 years. Yet I consider myself fortunate, because I have had the support of my husband, who has never doubted the severity or the reality of this disease. Also, I am to move about the house and manage basics of living and personal hygiene, such as bathing and preparing simple meals. Many people with CFS are unable to do that. But my husband is nearing 80 years old. Because I’m much younger, I thought I’d be taking care of him at this time of his life, but he’s my caregiver, and we live on his Social Security and pension. He’s slowing down, and I don’t know how we’ll manage.
I sometimes try to decide what is the worst part about having CFS. Is it the unending flu-like feeling, the pain, the loss of cognitive functioning that makes it feel that my brain’s moving through molasses? Or is it the inability to do any of the activities I enjoy, which defined my sense of self? Or the memory loss that leaves holes where parts of my life used to be? But I think that worst part is the hesitation I feel about mentioning the name of the disease that has ripped away my life.
Part of it is the name itself: to people who know nothing about it, “Chronic Fatigue Syndrome” sounds so trivial, like you’re just tired all the time, instead of the crushing exhaustion of the worst flu you ever had, a flu lasting for years instead of days. But worse than that is the reaction from people who have read about CFS in popular media, that it’s some modern-day version of hysteria or hypochondria; the careful non-reaction as their eyes slide away. Here’s a disease as debilitating as multiple sclerosis, congestive heart failure, COPD, West Nile, or end-stage AIDS, and yet it’s not taken seriously. I don’t want to tell people what disease I have, not because it’s anything to be ashamed of, but because of a prevailing attitude that it’s something I should be able to overcome with a positive thinking. That somehow I should be able to pull myself up and not give in to it, if I had a better attitude.
It’s infuriating, because no one would suggest that if I had AIDS or cancer or diabetes or MS. Frankly, I wish I did, because at least those diseases have treatments, and except in their last phases, they aren’t as disabling as CFS. But mostly because those diseases are accorded respect.
I find myself feeling a shameful simmering resentment every time I see one of those “pink” products that indicates the manufacturer is making a contribution to breast cancer research. Not simply because of the research money that disease is getting (though the government per-patient spending on breast cancer is already more than 100 times that of CFS), but because of the public respect and sympathy it represents. No corporation is donating 10 cents of every sale to CFS, because the public doesn’t take it seriously. There are no CFS benefit concerts or telethons. Who will stand up and speak for us?
So I want to thank you. That was one of the best programs I’ve seen on CFS. You treated it like the serious medical disease it is. I especially liked that you gave Deborah Waroff time to speak, even when she had to fish for the words. I’m sure you reached an audience that hasn’t heard much about CFS. Slowly, slowly, programs like yours may chip away at the ignorance and prejudice that makes a difficult, painful disease even worse. Thank you.
Thank you, Mr. King. It is so rare to hear anything compassionate about this damned disease, as we patients so fondly call it.
Twenty two years for me, 16 for my partner, and 10 for my granddaughter. How many more in my family must be completely disabled before we get funding for clinical trials?
You are so appreciated, no way to express it.
May I point out that the XMRV being investigated at Whittemore-Peterson and other places is not the only virus which is strongly associated with ME? There has always been strong evidence (going back to the Royal Free outbreak in London in the 1950s) that it is caused by an enterovirus, which is a virus of the same group as the virus which causes polio, with which the illness shares some features, and a number of cases of ME have been traced to enteroviral infections more recently. The research of Dr John Chia in California, while it has not received as much media fanfare as the XMRV findings, is consistent with older research from the UK.
You might not write about medical conditions.
Mr King, how will we ever thank you??
Someone who understands and has some empathy.
I am not bed bound by most but disabled.
I suffered with Cfs for 18 years and could not go any longer. My life existed of pain and exhaustion! My biggest concern now is how scary it is that young children and young adults who are coming down with this disease. To me that is scary they have no life and barely get around.
I had a friend about ten years ago who was in his thirties and could not provide for his family any more. He could not take the pain and fatigue. He committed suicide! At the time it happen I had not idea he had been to Mayo clinic and all over and they just brushed him off.
I have to Thank you for him and all of suffering. Most people have no clue what is going on. There is no cure, there might be remissions for a while but to my knowledge I dont know of a cure.
There have been times I have thought of suicide and I am older.
Words alone cannot Thank you enough. Please keep up the good work.
Thank you so much for your article “Chronic Fatigue…” which appeared Sunday in our Sun Herald paper in Gulfport, Ms.
I am an 84 year old woman who has been battling C.F.S. for ten years. I have yet to speak to a medical professional who knows as much as I do about this illness. Some of them are still questioning whether it really exists (it’s all in our heads. or it’s depression).
It is a heartbreaking disease. I was a writer and a college teacher for almost thirty years before I got CF.
It’s difficult now to have to struggle to remember everyday words or try to recall the names of acquaintances, if I can even remember that they are acquaintances.
Thank you a lot. Your column helps.
Anne Long
Thank you so much for this wonderful piece…you really cut to the heart of the matter. Like many, I have lost friendships and alienated family members by not being able to maintain these relationships. I’ve been disabled with ME and Lyme for 16 yrs. Oh I can’t tell you how hard it is to be a Mom and not be there physically/mentally for their needs. I truly feel, as I am crying now, that I let them down and been robbed of many motherhood joys.
Please come to the CFSAC Meeting in DC on Tuesday at the Hubert Humphrey Building; then write about what you experience. We NEED someone to speak on our behalf! If you go I can thank you in person.
Best wishes,
Karen Ravitz
Hello
This is to request permission to use “The Awful Disease Washington Forgot” article in our local support group newsletter. We are in Central California.
Thanks for you consideration.
Vivien
SJ CFIDS/FMS Support Network
I have spent a year polishing this 10 year summary of inadequate NIH research funding for CFS. The paper will be handed out on WED Oct 13 to the CFSAC meeting. Do you want it? BTW, my sources are all FOIA, gov meetings and science papers.
THANKS,a dinosaur CFS pt.
Thank you so much for writing the truth about CFS. I have had it for 5 years now. It is nasty. I appreciate so much that you are able to keep the seriousness of this disease in the public eye. THANK YOU
Karen in Canada
Thanks so much for your compassionate CFS article. You really do understand our terrible situation. I’ve now had CFS for over half of my life: it’s simply outrageous. So many lives have been destroyed and lost, all because the government has some kind of agenda (possibly contaminated vaccine-related) that prevents CFS research from being undertaken. Even our supposed “advocacy” group (CFIDS Association of America) is on the CDC’s payroll, and has been working against the CFS community for over 20 years (!) We seem to have reached a tipping point though, resulting from both the Whittemore Peterson Institute’s stellar XMRV research and mounting patient anger and frustration. I hope that you will continue to cover this neglected yet very important story as it unfolds.
Thanks again,
Sincerely,
Lolly
I just read the article, CFS: To Suffering, Add Anger…Can’t begin to understand how someone who writes such a sensitive, and intelligent article for the White House Chronicle can’t find a way to get this info into the ‘right hands’. I just heard that Blue Cross is no longer going to pay for CFS related office visits! Sounds like a MAJOR step in the WRONG DIRECTION…As a sufferer who’s had more sickness and frustration than any 10 people I know, I have nothing left to lose. Yes, I guess this is just another one of those sad and disturbing letters you mention in your article. Talk is cheap – when can we see some positive change to help us all get well?! PLEASE DO ALL YOU CAN TO GET THE WHITE HOUSE TO SIT UP AND PAY ATTENTION TO THIS VERY DISABLING DISEASE. OR WOULD THEY RATHER WE ALL JUST KEEP GOING ON DISABILITY AND CONTINUE TO SUCK WHAT’S LEFT OF THIS BANKRUPT SYSTEM DRY BY NO LONGER BEING ABLE TO BE PRODUCTIVE CITIZENS (THAT’S ALL I EVER WANTED TO BE!!)Thank you – Julie Houska
Thank you so much for your recent and excellent coverage of ME/CFS.
I have suffered from ME/CFS for 14 years. I first became ill quite suddenly at age 24 following a viral infection with mononucleosis. I’m now 38, and have been bedridden for a decade. I cannot walk, talk, stand, care for or even fully bathe myself. I have spent my entire life savings on various experimental treatments to no avail. I never have a single moment of genuine reprieve.
I should also note that I am XMRV positive, both by DNA PCR and culture.
My fiance also has ME/CFS and XMRV. He’s been sick 26 years, also following an infection with mononucleosis at a young age.
You can hear more of our story by viewing my video testimony to the CFSAC committee from last October. My health has only declined since that time, and I fear I may someday soon die of this illness, in part because nothing is being done.
I urge you to do all that you can to continue to raise more awareness and urge action so that one else suffers as I have suffered, and that viable treatments are soon found. Whether MLV’s prove to be causative or not, we need help. Lives are being lost by the millions here, and no one seems to care. Thank you so much for being one of the few to step up and takes notice. Thank you for being one of the few who care.
Laurel
____________
Dreams at Stake: A Journey of Hope Through Severe ME/CFS
http://dreamsatstake.blogspot.com
Thank you Mr King.
I have been housebound and often bed bound for 24 years with severe CFS (more properly named Myalgic Encephalomyelitis, or M.E.) The pain is unbelievable.
All the medical profession have offered is contempt, neglect and abuse.
The XMRV findings are being covered up; this gammaretrovirus has been known about in connection with CFS since the 1990s. ME/CFS is an AIDS like illness.
As far as I am concerned I died 24 years ago.I wish I had.
Thank you so much for noticing us, Mr. King. Feeling half-dead is a grueling experience.
Thank you. This article was very informative.
Thank you for raising awareness od this dreadful condition. I have been ill for 2 years and have received little care or support, have been left isolated and alienated, and am still fighting to receive financial support. It has wrecked my life. I’m in the UK where ME/CFS is largely assigned to psycho-trauma. After a year of being unwell and having no idea what was wrong, a nurse suggested that ME/CFS should be considered. My doctor told me that it wasn’t supposed to exist…The specialists told me that the latest research on XMRV was contaminated and ignored the >4000 papers documenting physical abnormalities associated with the condition, that I am blocked from being tested for. It is a truly a horrendous crime that millions are denied help. Criminals get better help and support.
Just to say thank you, from someone who has been bedbound for 7 years in the UK, with no support from the medical proffecion, again a very big heartfelt thanks
I am sorry to see that my comment did not pass your moderation procedures – is it because I am from the UK perhaps? ”
Why is it so difficult for the medical and scientific establishments to accept that some illnesses are caused by unidentified viruses that have yet to be found? I find it astonishing that for the past 20/30 years the viral link with ME/CFS has been repeatedly raised by bona fide research scientists and yet has always been discredited as, though the effects of the virus are clearly documented, the virus itself remains unidentified. When I studied science at University the whole point was to discover the unknown, rather like black holes, the effects of which are seen but are physically unproven. Just because you can’t find it yet, doesn’t mean it doesn’t exist! In my view it is a sad indictment on the scientific and medical profession that ME/CFS patients have been left for so long being treated as if suffering from Freudian hysteria rather than helped and treated like someone with Parkinson’s or Diabetes. It is no joke to live for years with a mentally and physically debilitating illness, as well as having to constantly justify yourself as being genuinely ill. Perhaps validation, and who knows even a cure, may soon be on the horizon and all of us silent sufferers of ME/CFS can start to live our lives again which would be nice.”
Posted 10 Oct 10
“Chronic Fatigue” is a sarcastic degradation in our culture, but it’s serious and completely debilitating. We should at least give it a socially and medically respectable name that conveys a condition in which “… there’s proof that inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to that of patients with late-stage AIDS…” (Dr. Nancy Klimas)
Thank you for raising awareness on behalf of a huge number of people who are physically unable to rally on their own behalf. My formerly vivacious, active mother has been struggling with the disease (physically and emotionally) for years.
Dear Mr. King,
Thank you so much for your compassionate article. You have written the truth. Outside of a handful of researchers, hardly anyone acknowledges the truth of our devastating disease, and I thank you for pointing this out. God bless you!
Thank you! Would it be too much to ask you to keep at it?
Thank you so much for taking people with ME seriously, for showing us such compassion and for writing this wonderful article!
Anne, ME sufferer for 17yrs, with no help from the NHS in the UK.
Dr. Mr. King,
The CFS community cannot thank you enough. There have been man stories written here and I would like to add just one more.
I recently saw an Ear,nose,throat (ENT) doc for the first time. I was having serious ear pain, congestion, and loud ringing. He took a quick look in my ears and prounounced that he did not think I had an ear infection. This was after he looked at my medical chart which had CFS and IBS marked on it. His suggestion was to give me xanax, take a hearing test and come back in 3 weeks.
That night the ear pain got so bad that I ended up in the emergency room where they discoverd serious infection in both my middle ears and started me on antibiotics. They kept me in the emergency room until I could be sent to my primary care doctor’s office where I was given a prescription for strong antibiotics and steroids. I sincerely believe that his diagnosis and suggestion was based on the fact that he thought I was just one more of those whining women with illnesses which don’t actually exist.
Please continue to help us spread the word regarding how serious CFS is.
Thank You,
Maxine
I must add my thanks to the chorus! I’m a newbie in the ME/CFS world, having entered this surreal world only in January of 2010. I, too, am angry about the experiences I’ve had as an active participant in the shadowy world in which I now exist. “Exist” is a thoughtfully chosen world as I no longer live. I’ve been describing myself as an “unburied corpse,” a term I now see as diagnostic for ME/CFS. I’m also profoundly disappointed. As a woman who became an RN almost 50 years ago, I feel completely let down by the differences in the medical world of today and the medical world I naively embraced and was socialized into in the early 1960’s.
I am also grateful that I am a ME/CFS newbie
at a time when XMRV may well be incontrovertibly established as the causative organism. I was able to be tested at WPI and am positive. I am very grateful that Medicare picked up the bill.
I am beyond furious that Unum, my disability insurer (?) had denied my claim because I do not have a disease and am not disabled by the disease I do not have. This, after paying me for 5 months for the exact same symptoms. One of their representatives told me as I was arguing for the legitimacy of my claim several months ago, “You’re not getting better.” Even with my brain fogged, I am having a great deal of difficulty following their logic.
I am frustrated because even though I have known I am XMRV positive for over a month now, I cannot find an infectious disease doc who will even see me, let alone prescribe drugs for me that have the potential of returning me to life.
I am grateful to all the courageous folks who have suffered for many, many years and more severely than I, who are my companions on this horrific journey. I, of course, have felt very isolated by ME/CFS. As I now finally, at times, have energy enough to sit at the keyboard and am accessing the online community, I now feel less alone. May God — and the CDC — bless us all!
Thank you for this compassionate and intelligent piece. Although this illness has left me for years in a state of bedridden pain and cofusion, I consider myself one of the lucky ones. Why? Because my husband has stood by me. Because I had a career and children before collapsing at age 44. (One of my closest friends with The Disease lost her son to it – he died of myocarditis at the age of 23.) Indeed, while inhale lost friends to suicide, more have died too young from heart failure or rare cancers, and some have been reduced to living on feeding tubes.
In some ways we actually know quite a lot about this disease – it is a jumble of immune defects and chronic (mainly viral) infections that cause great cognitive, neurological, cardiac, and other systemic problems. The pattern can vary depending on which infections and where they head. Unfortunately – inexcusably – the CDC actually lists these tests as inappropriate for patients. suspected of CFS. Because of that paragraph, patients have to pay cash for a LOT of tests at a time when most arebstruggling to pay the rent. So doctors don’t know to test for them, and in a tautology, why, nobody’s got anything.
Even CDC has had to admit that while sober estimates place the number of patients at one million, no more than 15% have been diagnosed. Where are the rest? Most of us are invisible, cared for by overworked relatives – where are the ones with no diagnosis, no treatment, and no one to care for them?
CDC’s website is filled with psychobabble, reminiscent of the days when doctors told women suffering from MS that they had hysterical paralysis. They have heard the same sad stories you have at CFSAC meetings twice a year at HHS in DC. I don’t know how they live with themselves.
But you, a stranger to our hidden world, understand.
Again, I can’t thank you enough.
Thank you, Mr. King, for posting all of this. It is true, there are a lot of us out here, having 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. I am extremely fortunate, now my mother is going to help me get down to Stanford in Palo Alto to see Dr. Montoya, and hopefully he will let me try the HIV medicines that seem to be of help to this condition. I am also XMRV/HHV-6/EBV/WNV and Lord knows what else positive. The CDC? -yes, I am ANGRY, angry, horrified, frightened – not merely for myself but for this entire country, to think how our leaders have covered up the true situations of our American Health System, and the incredible perils we are looking at, while ignoring our borders, our way of freedom, terror threats, and those who suffer from this horrific disease and others. America can do better- as well as my state’s leaders who just agreed to cut Medicaid. What about those people now? I am very angry with doctors who have sold out, dumbed out, refuse to properly treat basic pain and symptom issues, and for the most part, seem to be getting worse as physicians, losing all ethics, as well as the Boards of Medicine in this country, and DEA’s war on doctors. (Don’t misunderstand-I am NOT an illicit drug user or believer!) There is no excuse for the damage deliberately done to us. The few good doctors, are so few, so stressed, and really struggling. Despite the myths, in this economy, not many doctors or lawyers are making much money. I want happy, well paid, smart and compassionate reasoned doctors working and doing what they really love-healing patients, puzzling out the tough, intricate cases. The health departments here blew off the West Nile Virus epidemic (WNV) which is a life long remitting relapsing disease-so many people have died here from its complications. WNV and the other encephalitides (yep, I got that also, in 2006), and in Idaho the health department does not report it to the CDC. Now we also have Dengue fever, Malaria, etc. I do what I can when I can. I am in so much pain. My doctor had to hang up practicing, he was so ill with CFIDS/ME/XMRV after 15 years of working himself to death delivering world class care, as well as serving his country. My new doctor is awful to me, just deliberately cruel and judgmental, turning colder every visit. I am an easy to deal with patient, I know the ropes, and I know by now what works, no less and no more. And she knows better, which is worse. The pain is very hard to bear, and the loss of physical capacities, friends, self esteem, health-all those things everyone who has been victimized by CFIDS/ME/XMRV has related to you. I am a lawyer, and I am too ill to help people anymore. If I get better-well enough, I am going to work to help all people who suffer from these horrible diseases, and work to alleviate the losses it causes to our country and fellow victims as well. I will learn to lobby, work with Mosquito Abatement District establishments more (I helped get one established in a neighboring county), get reporting of the mosquito borne diseases made public again, and work with health costs issues like they should be done which I happen to have experience in. All these “not for profit hospitals” can help, they make so much money, yet barely put 1% to charity care in my state, Idaho. I will keep working to overcome the awful diseases that the CDC has deliberately allowed, even forced, upon Americans. America can do better. We are supposed to do a heck of a lot better in this country-because we are the country that can. Shame on our leaders that ignore us, our doctors that blow us off and harm us, and shame on Obama. Thank you for your ears, your writing, and for hearing us-with your heart and mind. Do not forget us, please keep reminding, goading, opening eyes. Bless you,
Lois H, Idaho
I recently read a book entitled “The One Minute Cure, the answer to virtually all diseases” by Madison Cavanaugh. After reading that Dr. Christian Barnard (world’s first heart transplant surgeon) tried hydrogen peroxide and it helped his arthritis, I decided to try it, having a bit myself. I took a small amount -food grade- in a glass of juice and distilled water for three months. Well it’s energizing, and while my arthritis hasn’t disappeared, I think it’s better, but then I didn’t take as much as they recommend. But if we want to reduce medical costs, the medical profession should be using it, probably for a lot of things.
Have you thought about adding some differing opinions to the article? I think it might enhance everyone’s understanding.
Thank you so much for taking our side. You have no idea how much it means to our community and we all hope that there will be great impact from your work.
From Canada, Kati
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This dreadful illness..ME/CFS.. once again recently put me into hospital (I ended up dehydrated due to it so had to be put onto a drip and my kidneys werent functioning right and struggling due to the dehydration). So now doctor worried about my kidneys.
This illness does truely terrible things to us (my bowel also prolapsed due to the IBS-C this illness has given me). Its like I get complication after complication due to this horrid disease. I really wonder how on earth do they just ignore such a serious disease? (but then I remember back in early AIDS days when AIDS patients were fighting to have their illness recognised. It happened to them for a time, why is it happening to us thou for over 20 years?).