The federal government has a mostly open dialogue with those it serves and those who serve it. This happens pretty well across government agencies, from the Pentagon to the Department of Transportation to the Department of Agriculture.
So it is troubling that the National Institutes of Health, an arm of the Department of Health and Human Services, appears to have no communication with a critical but ignored patient cohort: those suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, and often referred to only as ME/CFS. The NIH does not appear to hear the cries of the petitioners at its door; it seems to be interested only in classifying and defining the disease.
According to the Centers for Disease Control, ME/CFS afflicts 1 million people in the United States, and 17 million people around the world. While those numbers of victims are disputed, their suffering is not; they are ill in a terrible way.
ME/CFS takes healthy — often athletic — people and casts them into a shadow world of physical incapacity, mental fog, loneliness and relentless dependence on others. The suffering is measured in years and decades. Suicide is common.
It is a disease of the immune system, but what triggers it is unknown. Physicians who treat ME/CFS have told me that they would rather have cancer than this disease. One epidemiologist said, “With cancer, you are cured or you die. ME/CFS just goes on and on. You live the life of a zombie.”
From a physician devoted to treating and researching ME/CFS, this is not only a terrible admission, but also a de facto indictment of the national effort to find a cure, or even a therapy, for alleviating the suffering.
One of the problems affecting ME/CFS treatment is diagnosis. There are no biological labels, known as markers, that enable doctors to easily identify ME/CFS; it cannot be picked up in a blood tests or a urine sample. It is a ghostly manifestation, and doctors fall back on what is known as wastebasket diagnosis. In its simplest form, this means testing for a lot of diseases and if it does not turn out to be one of them, it could be ME/CFS.
But one case definition has satisfied the ME/CFS community in recent years, and it is endorsed by specialists in the field. Established in 2001, it is called the Canadian Consensus Criteria.
Yet, incomprehensibly, the NIH is spending some of the paltry $6 million devoted to ME/CFS, on a study to come up with a new case definition for the disease; something that no one wants and which could do real harm.
To do this work, the NIH selected the Institute of Medicine (IOM), which has no expertise in ME/CFS and which had drawn opprobrium with its clumsy attempt to do a case definition of Gulf War Syndrome.
The NIH, which has failed to explain itself in plain English, has ignited incandescent rage in the patient community and from patient advocates. In a unique outpouring of objection, 50 of the world's top doctors and clinicians wrote to Secretary of Health and Human Services Kathleen Sibelius, pleading with her not to muddy the waters and to stay with the definition which is working well. The NIH went ahead with the IOM contract.
So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work. Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research.
Judging by social media, the entire patient community is in a state of metaphorical war with the NIH.
There is a cry from and on behalf of the pitiable sick for action, sympathy and even courtesy from the bureaucrats in Bethesda, where the NIH is headquartered. The Hippocratic Oath says, “first do no harm.” When people are in pain and despair, inaction is palpable harm.
A congressional hearing is needed to investigate decision-making in the NIH, find out about its budget request to the Office of Management and Budget, and to demand that it listen to those who suffer and those who are trying to help them. — For the Hearst-New York Times Syndicate
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If you get a petition up to ask congress for a hearing, I'll be happy to sign it.
If you get a petition up to ask congress for a hearing, I'll be happy to sign it.
I have been sick with ME/CFS for 14 years. Please listen to experts about this disease, and stop spending money defining this illness that has already been defined by the Canadian Consensus Criteria.
Mr King,
THANY YOU, THANK YOU for writing this eloquent article. You synopsis was perfect. I can now send this article on to friends and family and for anyone who will read.
i am part of the uprising from my bed. When will our government believe this to be true?- 8 years of my life taken, how many more will I endure!
A most EXACTING summation, Llewellyn, of the ONgoing debacle–errr–'state of affairs' concering the agenda/aim, by the HHS, CDC, NIH, IoM C'tee/JURY, P2P, to bury the debilitating disease of ME/CFS along with those of us 'people' / citizens suffering for decades with this horrid disease–AND those that will be newly diagnosed today, tomorrow, next week and beyond into future with ME/CFS–and this sadly includes the world's children.
Government, power, greed, lies, big insurance company interests, conflicts of interests . . . it's all there. 'If they ignore it long enough–ME/CFS will go away'—WRONG–ME/CFS IS spreading globally and there are definitely those that are to blame!!! AND–you know who you are! What will YOU do if you and/or 'your' family/friends get afflicted with ME/CFS; no guarantee that your biological line is 'immune'–go ahead and blame yourselves for this legacy–you did it—your INaction, DISregard and DIShonesty have directly led to this pandemic of ME/CFS. WHEN are you going to make this right and take responsibility ?? The time is NOW. We ask you to make this RIGHT!! It is your duty!!
Casting us all aside and, indeed, attempting to cover up the realities and truths to ME/CFS–thus BLOCKING important biological research and withholding research funds–as well as criminally REdirecting allocated funds to ME/CFS–is tantamount to human cruelty and abuse.
May those of us in the 'older' generation live long enough to see JUSTICE done with regards to ME/CFS. Thank you so much, Llewellyn King, for all that you do in speaking out and reporting the truths surrounding ME/CFS in an effort to bring about this justice for ME/CFS patients–both young and older.
Indeed, as noted above by leading doctors, I would rather be fighting cancer–as there is treatment available for cancer–and many persons do recover after treatment–then able to live their daily and long-term lives fully, actively, freely and feeling in good health. With ME/CFS–there is NO treatment–very rarely improvement to an active normal life–and even rarer is there recovery–we are LEFT with very ILL health daily and for the long-term–cast aside and LEFT to 'manage' in an isolated UNlife–isolated because we are so ill we are very often home-bound–and many persons are bedbound–our lives completed altered and stolen from us by ME/CFS and 'you'.
This is criminal and shameful on the parts of governments in the U.S. and globally; completely outrageous and UNacceptable.
There are some ME/CFS Experts and Researchers that continue to fight for us–and bless their socks for going to bat for us–the 'roadblocks' to ME/CFS biological research must be taken down, 'left and cast aside'—NOT persons with ME/CFS left and cast aside as is the status quo!!!
A most EXACTING summation, Llewellyn, of the ONgoing debacle–errr–'state of affairs' concering the agenda/aim, by the HHS, CDC, NIH, IoM C'tee/JURY, P2P, to bury the debilitating disease of ME/CFS along with those of us 'people' / citizens suffering for decades with this horrid disease–AND those that will be newly diagnosed today, tomorrow, next week and beyond into future with ME/CFS–and this sadly includes the world's children.
Government, power, greed, lies, big insurance company interests, conflicts of interests . . . it's all there. 'If they ignore it long enough–ME/CFS will go away'—WRONG–ME/CFS IS spreading globally and there are definitely those that are to blame!!! AND–you know who you are! What will YOU do if you and/or 'your' family/friends get afflicted with ME/CFS; no guarantee that your biological line is 'immune'–go ahead and blame yourselves for this legacy–you did it—your INaction, DISregard and DIShonesty have directly led to this pandemic of ME/CFS. WHEN are you going to make this right and take responsibility ?? The time is NOW. We ask you to make this RIGHT!! It is your duty!!
Casting us all aside and, indeed, attempting to cover up the realities and truths to ME/CFS–thus BLOCKING important biological research and withholding research funds–as well as criminally REdirecting allocated funds to ME/CFS–is tantamount to human cruelty and abuse.
May those of us in the 'older' generation live long enough to see JUSTICE done with regards to ME/CFS. Thank you so much, Llewellyn King, for all that you do in speaking out and reporting the truths surrounding ME/CFS in an effort to bring about this justice for ME/CFS patients–both young and older.
Indeed, as noted above by leading doctors, I would rather be fighting cancer–as there is treatment available for cancer–and many persons do recover after treatment–then able to live their daily and long-term lives fully, actively, freely and feeling in good health. With ME/CFS–there is NO treatment–very rarely improvement to an active normal life–and even rarer is there recovery–we are LEFT with very ILL health daily and for the long-term–cast aside and LEFT to 'manage' in an isolated UNlife–isolated because we are so ill we are very often home-bound–and many persons are bedbound–our lives completed altered and stolen from us by ME/CFS and 'you'.
This is criminal and shameful on the parts of governments in the U.S. and globally; completely outrageous and UNacceptable.
There are some ME/CFS Experts and Researchers that continue to fight for us–and bless their socks for going to bat for us–the 'roadblocks' to ME/CFS biological research must be taken down, 'left and cast aside'—NOT persons with ME/CFS left and cast aside as is the status quo!!!
My daughter has CSF, and I have watched her deteriorate the past 25 years. She came down with this disease in Incline, NV. She has are suffering from this horrible disease.
Dear Sir,
Thank you for such an eloquently expressed report of the most current assessment of the State of the Union of ME/CFS sufferers in the USA. Your sentiments are most welcome. It is a sad inditement of the 2014 approach by the NIH to ME/CFS, which in my opinion, is pitiful, to say the least. The NIH is so out of touch that its approach to the situation is beyond comprehension to even the least informed advocates, but more so to those who are highly experienced in this field.
The NIH being given some kind of bizarre mandate to 'fix' some issues unbeknownst to all, to me is like casting pearls before swine. It is hard to believe that no sooner has some great researcher made important inroads into this field that autocratic amnesia emerges in the NIH arena, such that we doctors and patients are yet again bound by medieval mind sets amongst our so called NIH leaders. This serves no function in a world that is otherwise making great medical advances. Worst of all, this phenomenon is no accident.
As democratic as we would like to think the USA is, if leaders are so demanding of work-in-progress that they reject all but irrefutable conclusions, then the baby will be constantly being thrown out with the bath water.
In this way, a stranglehold on progress emerges that impairs or even locks down the normal slow but sure evolution of scientific development that ought to have been productive at a formal level after nearly 30 years of research in this field.
Instead, we remain at a standstill, as far as the NIH is concerned, where stagnation seems to be its ongoing modus operandi. I am unable to fathom what the NIH is currently doing, because it is NOT PROGRESS, nor is it anything resembling progress.
In fact, I think leadership amongst the NIH could be likened to the blind leading the blind, not realising that the rest of us have 20/20 vision. Whatever emerges from this undemocratic state of affairs will, by definition, not be progress.
What we will be served up from their kitchen will not be worth eating, despite the enormous costs of its preparation. It is not only the meat that is of poor quality, but they have no idea how to cook either. A restaurant of this poor calibre would quickly go out of business. However, there seems to be a few unusual clients that really do enjoy and revel in the sawdust meals they serve up and presumably profit from this distasteful cuisine. Who are these clients, I wonder?
With gratitude,
Dr John L Whiting
Brisbane, Australia
YES. " A congressional hearing is needed to investigate decision-making in the NIH, find out about its budget request to the Office of Management and Budget, and to demand that it listen to those who suffer and those who are trying to help them."
The first request I made to ask for an investigation was to the HELP committee. I did not even have FOIA information back then to support my questions about one or two new grants per year. That 6 mill includes the money for grants already funded. So if someone has a 3 year grant, the Office of Budget tallies the money each year until the grant is up for renewal.
YES, THANK YOU.
YES. " A congressional hearing is needed to investigate decision-making in the NIH, find out about its budget request to the Office of Management and Budget, and to demand that it listen to those who suffer and those who are trying to help them."
The first request I made to ask for an investigation was to the HELP committee. I did not even have FOIA information back then to support my questions about one or two new grants per year. That 6 mill includes the money for grants already funded. So if someone has a 3 year grant, the Office of Budget tallies the money each year until the grant is up for renewal.
YES, THANK YOU.
Thank you so much for writing the words no one wants to hear. Stigma is such that patients are left behind at all levels of health care. Our rare experts that treat us are also left behind by their peers. This has got to stop.
Thank you so much for writing the words no one wants to hear. Stigma is such that patients are left behind at all levels of health care. Our rare experts that treat us are also left behind by their peers. This has got to stop.
Thank you for this. I have only been affected for 2 years, but the difference to my life is dramatic. How can people in positions of power not see how we suffer?
In N.Ireland, we are also campaigning for the CCC https://www.dropbox.com/s/mooi1jlukakmnk3/Adopt%20CCC%20for%20NIreland%20collecting%20signatories.pdf
Thank you for this. I have only been affected for 2 years, but the difference to my life is dramatic. How can people in positions of power not see how we suffer?
In N.Ireland, we are also campaigning for the CCC https://www.dropbox.com/s/mooi1jlukakmnk3/Adopt%20CCC%20for%20NIreland%20collecting%20signatories.pdf
Thank you, Mr. King. NIH and CDC must end their war on ME patients NOW! We will not be persecuted any longer!
Thank you, Mr. King. NIH and CDC must end their war on ME patients NOW! We will not be persecuted any longer!
This is a well directed story.
If you look deeper at CFS/ME you will see the extensive overlap with Gulf War Illnesses (GWI). This not only in the way the government treats the victims, but the actual biology of the illnesses, and the cause(s), and potential prevention.
Jim Moss, Gainesville, Florida
This is a well directed story.
If you look deeper at CFS/ME you will see the extensive overlap with Gulf War Illnesses (GWI). This not only in the way the government treats the victims, but the actual biology of the illnesses, and the cause(s), and potential prevention.
Jim Moss, Gainesville, Florida
It can hardly be explained how life altering this disease is. It takes you from living to trying to survive. Thank you Mr. King for doing such a good job of describing the situation. If officials could really understand how horrible this is I know they would take greater action
It can hardly be explained how life altering this disease is. It takes you from living to trying to survive. Thank you Mr. King for doing such a good job of describing the situation. If officials could really understand how horrible this is I know they would take greater action
Hear! Hear! Eloquently put! I have often referred to this as a governmental experiment gone awry or not yet concluded…a REAL zombie apocalypse. The government's seeming lack of concern…trickling down to the medical profession… in regards to this debilitating illness only serves to confirm such ideas. It amazes me that, when everything seems to come down to $$$, we could still be valuable contributors to society (and the tax base), but we are left to languish in our homes…often at the expense of the taxpayers. At least for now we are in our homes in the US…how long before that is taken away from us as is happening in the UK?
Hear! Hear! Eloquently put! I have often referred to this as a governmental experiment gone awry or not yet concluded…a REAL zombie apocalypse. The government's seeming lack of concern…trickling down to the medical profession… in regards to this debilitating illness only serves to confirm such ideas. It amazes me that, when everything seems to come down to $$$, we could still be valuable contributors to society (and the tax base), but we are left to languish in our homes…often at the expense of the taxpayers. At least for now we are in our homes in the US…how long before that is taken away from us as is happening in the UK?
Thank you, Mr. King, for your continued support of this terrible illness. I cannot, for the life of me, figure out why this illness is so UNbelievable to sooo many people; especially, the medical profession, and our governments. Do they REALLY think that sooo many with these neuro/immune symptoms are MAKING this up?? IMO, it would be very difficult to make up all these signs & symptoms up in our head. WE all have soo much more we could be doing: hell, we would be living, working, having a social life, etc. I think our gov't/ NIH is covering up something. Otherwise, SOMEONE with power would be UNcovering this madness that supposedly, "they" believe is "all in our heads." I agree with the above replies to your article. A gov't experiment gone awry, or NOT YET CONCLUDED, til they kill us off. ? Thank you again. I feel that I wish there was more that I could do to make the health professionals & gov't understand, but they don't give a SH–. And, besides, I don't have the energy to fight all these idiots.
Thank you, Mr. King, for your continued support of this terrible illness. I cannot, for the life of me, figure out why this illness is so UNbelievable to sooo many people; especially, the medical profession, and our governments. Do they REALLY think that sooo many with these neuro/immune symptoms are MAKING this up?? IMO, it would be very difficult to make up all these signs & symptoms up in our head. WE all have soo much more we could be doing: hell, we would be living, working, having a social life, etc. I think our gov't/ NIH is covering up something. Otherwise, SOMEONE with power would be UNcovering this madness that supposedly, "they" believe is "all in our heads." I agree with the above replies to your article. A gov't experiment gone awry, or NOT YET CONCLUDED, til they kill us off. ? Thank you again. I feel that I wish there was more that I could do to make the health professionals & gov't understand, but they don't give a SH–. And, besides, I don't have the energy to fight all these idiots.
I've said the following before, they are ignoring the suffers of this awful disease for a reason! I truly believe our government knows more than it dares to reveal ! Wake up Americans we have a corrupt governing system and the signs are all around us! Until we regain control of our own governance and take it out of the hands of big business and corrupt politicians the population of our country will continue to suffer great costs in health as well as every other area of our lives.
I've said the following before, they are ignoring the suffers of this awful disease for a reason! I truly believe our government knows more than it dares to reveal ! Wake up Americans we have a corrupt governing system and the signs are all around us! Until we regain control of our own governance and take it out of the hands of big business and corrupt politicians the population of our country will continue to suffer great costs in health as well as every other area of our lives.
I am beyond outraged by this. I suffer from ME. I went from being able to work to being completely bed bound. It is horrendous that research dollars are being taken away to create some bogus definition. Listen to us! Our families suffer as well they become caregivers we would never want them to be. Why if so many people are suffering are we not getting funding to help? If u truly spent one day in our shoes this would change.
I am beyond outraged by this. I suffer from ME. I went from being able to work to being completely bed bound. It is horrendous that research dollars are being taken away to create some bogus definition. Listen to us! Our families suffer as well they become caregivers we would never want them to be. Why if so many people are suffering are we not getting funding to help? If u truly spent one day in our shoes this would change.
Dr King, I made an error. I see that there are some esteemed individuals on the IOM Task Force after all. My previous comments therefore, are inappropriate.
Kind regards,
Dr John L Whiting
Dr King, I made an error. I see that there are some esteemed individuals on the IOM Task Force after all. My previous comments therefore, are inappropriate.
Kind regards,
Dr John L Whiting
ME is defined by the fact that muscular exertion results in 'delayed and protracted recovery', and the UK doctors who had the most to do with it following the Royal Free outbreak in 1955 stated unequivocally that complete rest gives the best prognosis. It is a very paradoxical illness – people who 'fight' it – try to push past the muscle failure – make themselves very much worse, often becoming permanently bed-bound. Paradoxically, the more the patient adopts an invalid life-style in the early stages, the more likely they are to experience gradual improvement, towards recovery. However, patients remain vulnerable to the effects of over-exercise, and even after being relatively well for years, may bring on a relapse, even a long-term relapse, by doing too much. Paradoxically, also, people who get it tend to have been active, atheletic, ambitious, happy and successful professionals, often doctors or nurses.
Because the symptoms are numerous and variable, and the illness continues for a long time, it actually sounds like a major case of hypochondria. But – if there is no previous history of going to the doctor for every little thing, and no previous history that would lead to a psychiatric problem, one is forced to conclude that it is a physical problem, despite the difficulties in finding one test that would prove it. However, the pattern is very recognisable, involving mainly this strange failure of muscle function, in which the aerobic metabolism is implicated, plus cognitive problems similar to those in Alzheimers – failure of short-term memory, trouble finding the right word for things, getting exhausted by mental effort, plus problems of endocrine regulation – variable body temperature, sleep rhythms, appetite – plus problems indicating immune activation – low grade temperature, swollen and sore lymph glands, sore throat – plus the variability of symptoms over hours and days – most usually connected to levels of exertion – and you have an easily recognisable pattern which is much too complicated for anyone to make up – especially people who have never heard of the illness, and children. Doctors who research this illness agree that it seems to be an autoimmune problem, most often precipitated by a viral infection, from which the patient seems not to recover.
However, psychiatrists have a powerful interest in claiming this to be a psychiatric problem. Millions have been spent in the UK setting up specialist treatment centers, and having persuaded the powers that be that ME is best treated by Cognitive Behaviour Therapy, to get patients to stop believing they have a physical illness, and Graded Exercise Therapy, to make them increase their activity level, these centers provide jobs for lots of psychiatrists, psychologists, physiotherapists and 'rehabilitation experts'. It is generally recognised by patients that these treatments make them worse, often much worse. Even in the treatment protocols there is reference to the fact that patients may relapse, and may then not return to their previous level of function. The obvious common sense conclusion is that the treatment is causing the relapse, and should not be undertaken in the first place, but then all these people would be out of a job. Besides, if you say the problem is just a mental problem, you can blame treatment failure on the patient, not the treatment.
It seems a reasonable supposition that the NIH has been listening to some of these very influential psychiatrists, some of whom have links with insurance companies interested in saving money on disability claims, and that this is why the IOM are going ahead with their plan – which, if you read their report on Gulf War syndrome, is to get all of these illnesses labelled 'Chronic Multisystem Disorders' (which up to now have included MS and lupus erethematosis – illnesses which used to be labelled psychiatric until they were better understood), and to have 'Chronic Multisystem Disorders' called 'functional' – the latest term for 'all in their head', via 'hysteria', 'somatoform disorder' and 'conversion disorder'. And no one will be surprised to learn that the preferred ('evidence-based') treatments recommended will be CBT and GET.
And what is this 'evidence'? The PACE Trial, which used a self-report scale, on which a score of 85 indicates good health. Subjects were considered sick enough to be eligible for the trial if their score was 65 or lower. Sometime during the trial, it was decided that a score of 60 would be counted as 'recovery'. So if you were sick enough to qualify, at 65, and became sicker so that at the end of the trial your score was 60, you were recorded as having recovered. The principle researcher in this trial is the same person who, in 2010 was a consultant to the IOM, recommending that they do research into ME/CFS, and making definite suggestions about what they should find. He is a psychiatrist.
Although not all patients will be aware of all this history, they are aware that something has already been decided, and that this will lead to patients be offered – or even coerced – into treatments which will harm them. They may sound frantic, but it is with very good reason.
ME is defined by the fact that muscular exertion results in 'delayed and protracted recovery', and the UK doctors who had the most to do with it following the Royal Free outbreak in 1955 stated unequivocally that complete rest gives the best prognosis. It is a very paradoxical illness – people who 'fight' it – try to push past the muscle failure – make themselves very much worse, often becoming permanently bed-bound. Paradoxically, the more the patient adopts an invalid life-style in the early stages, the more likely they are to experience gradual improvement, towards recovery. However, patients remain vulnerable to the effects of over-exercise, and even after being relatively well for years, may bring on a relapse, even a long-term relapse, by doing too much. Paradoxically, also, people who get it tend to have been active, atheletic, ambitious, happy and successful professionals, often doctors or nurses.
Because the symptoms are numerous and variable, and the illness continues for a long time, it actually sounds like a major case of hypochondria. But – if there is no previous history of going to the doctor for every little thing, and no previous history that would lead to a psychiatric problem, one is forced to conclude that it is a physical problem, despite the difficulties in finding one test that would prove it. However, the pattern is very recognisable, involving mainly this strange failure of muscle function, in which the aerobic metabolism is implicated, plus cognitive problems similar to those in Alzheimers – failure of short-term memory, trouble finding the right word for things, getting exhausted by mental effort, plus problems of endocrine regulation – variable body temperature, sleep rhythms, appetite – plus problems indicating immune activation – low grade temperature, swollen and sore lymph glands, sore throat – plus the variability of symptoms over hours and days – most usually connected to levels of exertion – and you have an easily recognisable pattern which is much too complicated for anyone to make up – especially people who have never heard of the illness, and children. Doctors who research this illness agree that it seems to be an autoimmune problem, most often precipitated by a viral infection, from which the patient seems not to recover.
However, psychiatrists have a powerful interest in claiming this to be a psychiatric problem. Millions have been spent in the UK setting up specialist treatment centers, and having persuaded the powers that be that ME is best treated by Cognitive Behaviour Therapy, to get patients to stop believing they have a physical illness, and Graded Exercise Therapy, to make them increase their activity level, these centers provide jobs for lots of psychiatrists, psychologists, physiotherapists and 'rehabilitation experts'. It is generally recognised by patients that these treatments make them worse, often much worse. Even in the treatment protocols there is reference to the fact that patients may relapse, and may then not return to their previous level of function. The obvious common sense conclusion is that the treatment is causing the relapse, and should not be undertaken in the first place, but then all these people would be out of a job. Besides, if you say the problem is just a mental problem, you can blame treatment failure on the patient, not the treatment.
It seems a reasonable supposition that the NIH has been listening to some of these very influential psychiatrists, some of whom have links with insurance companies interested in saving money on disability claims, and that this is why the IOM are going ahead with their plan – which, if you read their report on Gulf War syndrome, is to get all of these illnesses labelled 'Chronic Multisystem Disorders' (which up to now have included MS and lupus erethematosis – illnesses which used to be labelled psychiatric until they were better understood), and to have 'Chronic Multisystem Disorders' called 'functional' – the latest term for 'all in their head', via 'hysteria', 'somatoform disorder' and 'conversion disorder'. And no one will be surprised to learn that the preferred ('evidence-based') treatments recommended will be CBT and GET.
And what is this 'evidence'? The PACE Trial, which used a self-report scale, on which a score of 85 indicates good health. Subjects were considered sick enough to be eligible for the trial if their score was 65 or lower. Sometime during the trial, it was decided that a score of 60 would be counted as 'recovery'. So if you were sick enough to qualify, at 65, and became sicker so that at the end of the trial your score was 60, you were recorded as having recovered. The principle researcher in this trial is the same person who, in 2010 was a consultant to the IOM, recommending that they do research into ME/CFS, and making definite suggestions about what they should find. He is a psychiatrist.
Although not all patients will be aware of all this history, they are aware that something has already been decided, and that this will lead to patients be offered – or even coerced – into treatments which will harm them. They may sound frantic, but it is with very good reason.
Coming from the White House Chronicle, might we dare to hope that the President of the United States is aware of this? His promise to a patient some time ago to sit down with K. Sibelius was a disappointing response, indeed. She might well be the LAST person anyone might learn about ME/CFS/CFIDS from. How about all these medical experts, Mr. Obama? Gracious thanks to Mr. King for pursuing this as outstandingly as he does.
Coming from the White House Chronicle, might we dare to hope that the President of the United States is aware of this? His promise to a patient some time ago to sit down with K. Sibelius was a disappointing response, indeed. She might well be the LAST person anyone might learn about ME/CFS/CFIDS from. How about all these medical experts, Mr. Obama? Gracious thanks to Mr. King for pursuing this as outstandingly as he does.
I agree with others who have commented. Thank you for such a succinct, yet comprehensive and user friendly article about CFS/ME. I too will point my family members and friends to this explanation, those who are still interested. Another unfortunate side effect of this horrible illness. I have been ill since 2000, with some periods of relatively okay health, but really ill the past two years, with no end in sight. It is so sad. For me and the countless others suffering so greatly. Thank you again. We truly need you.
I agree with others who have commented. Thank you for such a succinct, yet comprehensive and user friendly article about CFS/ME. I too will point my family members and friends to this explanation, those who are still interested. Another unfortunate side effect of this horrible illness. I have been ill since 2000, with some periods of relatively okay health, but really ill the past two years, with no end in sight. It is so sad. For me and the countless others suffering so greatly. Thank you again. We truly need you.
Comment to John L. Whiting–your second post on March 6th–yes, there are some ME/CFS Experts on the IOM committee. HOWEVER, thru the parameters set out for the committee–their hands are tied as to helping patients. The parameters are SET for a predetermined outcome. This is NOT good.
Comment to John L. Whiting–your second post on March 6th–yes, there are some ME/CFS Experts on the IOM committee. HOWEVER, thru the parameters set out for the committee–their hands are tied as to helping patients. The parameters are SET for a predetermined outcome. This is NOT good.
Nice article. Always enjoy your news coverage.
Thank you very much.
Nice article. Always enjoy your news coverage.
Thank you very much.