Chronic fatigue syndrome activists…
…have made threats against researchers who dare to suggest that even part of their suffering might be due to psychological reasons.
Now, has that convinced you of how psychologically stable the activists are?
[Researcher] Crawley has spent years trying to unravel the causes, but her refusal to accept that the condition is a result only of organic external factors has resulted in her being deluged with hate mail from extremists. “You evil bastards ”¦ time is running out for you so you have [sic] better start denouncing your flawed inhumane therapy and pray to God for forgiveness,” said one.
“To those who are responsible for preventing us sick ME sufferers from getting the help we need … you will all pay,” stated another. “It is depressing to receive emails like that, but I make sure that it does not get me down,” said Crawley. “I do check packages that are sent to my office, however.”
Many of the extremists’ claims are bizarre, said Professor Simon Wessely, of the Institute of Psychiatry at King’s College London. “They say I am in league with pharmaceutical companies in order to suppress data that shows a link between viruses and the syndrome. But why on earth would drug companies do that? If they could link the condition to a virus they would be well on the way to developing lucrative treatments and vaccines. It is crazy.”
Wessely has installed speed dial phones and panic buttons at the police’s request and has his mail X-rayed. He gave up his research on chronic fatigue syndrome several years ago, though he still treats patients.
In the last few decades, patients have felt increasingly empowered to advocate for themselves. This is ordinarily to the good, but it can get out of hand. This, combined with scientific illiteracy (which I’ve written about before, here) has created a phenomenon that, paradoxically, stifles research that might actually help conquer the diseases from which they and/or their loved ones suffer.
Science used to be about the search for truth; now a lot of people seem to think it’s about validating their own agenda. Many people also seem to think that a solution should always be found, and soon—and that if it isn’t, scientists are either corrupt or lazy, or both.
I’m too tired to respond other than to say that whoever wrote “To those who are responsible for preventing us sick ME sufferers” proves that they think it really is all about them.
As the chief of a large psychiatry clinic, over the years I have seen many patients suffering from chronic fatigue. I have yet to see one who did not also suffer from major depression or dysthymic disorder. This is not to say that there is necessarily a causative relation in either direction; it is simply an association.
In not a few of these cases, it seemed to me that the patient was suffering only from the depressive disorder, and that the chronic fatigue was a manifestation of the depression. But it would be difficult to prove this, given the present state of our ignorance. (In psychiatry, it is generally safer to speak of ignorance, rather than knowledge.)
Jamie Irons
I have a TBI , and one of the side effects is intense fatigue. Okay,I’m good with that. It’s simply a function of the injury , That said, it’s my problem, no one else’s and when I find myself dragging, I either stop what I’m doing if I can or gut it out and sleep earlier at night .
The crazies who want to harm the researchers truly need to be put on ice. It’s obviously “all about me, you selfish bastards ” entitlement mentality, a step removed from rioters. Geez, these folks need to get the proper treatment, own up to what it is . I have ..
True science still is about finding truth. Most people just don’t understand science.
Thanks for the post, Neo. It’s unexpected and doubly welcome on a Sunday.
Not to be a language vigilante, but: IMHO, when appropriate, we should call a spade a spade and replace the euphemism “activist” by “terrorist”.
!. I would imagine that one major side effect of the lies, suppression, and manipulation of data found to have been done by “scientists” pushing the global warming orthodoxy has been to discredit all scientific investigations and investigators in general.
2. A relative was studying primates, and toured a very deliberately low profile primate research facility that had many security features in place to protect the facility and those who worked there from both the primates (a chimpanzee can very easily literally rip your arms off, not to mention the primates that liked to throw shit at you, shit that contains very deadly bacteria and viruses–it seems that we “civilized” primates haven’t changed all that much), and from the human crazies who wanted to shut their research down/release the animals, destroy the “inhumane” facility that was also working on cures for several major diseases.
Chronic fatigue activists? As in active and energetic? Don’t sound very fatigued to me.
We’ve got a rather long social history of nutjobs pretending to science. Autism, preservatives, anti-bovine growth hormone are just a few examples of issues with nuts at the wheel. ACT-UP is the template from which all these agitators draw.
You want to sell something? Just indicate it’s full of anti-oxidants. Not one in a thousand bobbleheads knows what ‘oxidation’ means. I regret to observe that more than 2/3s of the oxidant-fearing are female, too.
There’s definitely a magic authority syndrome that probably started around 1969 when we put a man on the moon. Which is a syndrome that basically asserts anything is possible and what doesn’t get accomplished is from sinister uncaring and greed.
This is why liberals roll their eyes at the idea of America going bankrupt and think every death and illness in the country is always preventable.
It’s also the result of the amazing achievements of medicine in the 20th century. Think about it: from about 1960 to about 1980, nobody in a wealthy western country really had to worry about dying from disease. Cancer, sure. Heart problems, oh yes. Accident and injury, of course. But a germ? Nope.
Then came AIDS. An infectious disease which was not only incurable but deadly. And people just went nuts. They blamed the CIA for creating it, they blamed drug companies for suppressing the miracle cures which would make it go away, they blamed Reagan and Thatcher for . . . um . . . nothing very concrete, but they blamed them anyway.
If a disease is not curable, that is the result of conscious action by evil people. This is an attitude which has spread through society and is tearing us apart.
“Science used to be about the search for truth; now a lot of people seem to think it’s about validating their own agenda. Many people also seem to think that a solution should always be found…”
Science is the new religion with a denomination for every flavor of indisputable dogma that needs to be validated with the consensus of “facts” from the majority of experts, whoever the hell they might be, to bring salvation, peace & social justice, and “a cure” to the world. Dangnammit!
Sound like nutjobs to me. If there’s an established psychological component, as Jamie’s comment implies, then it remains for an organic component to be demonstrated. Parsimony of postulates, and all that.
What’s the take on fibromyalgia? While I’ve not looked into it, I’ve garnered the impression that that’s likely to be psychosomatic also. Similarly with the myriad symptoms associated with silicone breast implants. My suspicion in each case is triggered by the plethora of apparently disparate symptoms attributed to the syndrome. One would expect more message discipline from a real pathology.
A now well-known KGB disinformation campaign, and one that the KGB were very proud of.
This allegation generically irritates me. In its classic form it ran something like “if men got breast cancer, they’d have cured it by now.” Such weapons-grade stupidity is hard to counter. Apparently those espousing it were asking us to believe a) that male researchers don’t have mothers, wives, sisters, or daughters whom they love, b) that said researchers were infinitely intelligent and could necessarily cure anything, c) to maintain masculine solidarity they’d all voluntarily eschew the Nobel Prize and vast riches simply to keep pharma ticking over at idling speed.
This one also irritates me. At the urging of a homosexual colleague I read And the Band Played On, by Randy Shilts, a main theme of which was Reagan’s complicity in the spread of the disease by his inaction. But as even Shilts admitted, the biggest factor was the resistance of the bathhouse owners in SF and the homosexual community there generally to any change in the lifestyle that was spreading the disease like crazy.
I will assume that the message I tried to post hours ago didn’t show up because it included several links. I’ll leave them out this time. But I will note that the sources I linked to were limited to the CDC, the BBC, and medical journals. If anyone doubts that what I have excerpted actually comes from these sources, I can try to add them in non-link form. If anyone doubts the sources themselves, I’m not sure I could provide anything better to counter some of the stuff I’m reading here about this Guardian piece, which is unbelievably bereft of any critical analysis. But most people don’t actually know what Myalgic Encephalomyelitis is, or who Simon Wessely is, (or the difference between the Fukuda criteria and the Oxford criteria, or the Canadian Consensus Criteria and the Empiric Criteria, or the Holmes criteria and the Ramsay criteria…) so they just take what they read at face value. Sad.
Interesting that the general level of discourse here on this issue is remarkably similar to that on Democratic Underground. You should all be proud.
Oh, and if you’re the “tl;dr” type, don’t let pesky facts get in the way. Sticking to preconceived notions based on misinformation and distortion is so much better. Silly me, I thought that’s what liberals do…oh, never mind.
***
Well, it seems like you all know a whole lot about Myalgic Encephalomyelitis. Nothing like people actually possessing knowledge about that which they are writing about and commenting on.
This is Myalgic Encephalomyelitis. As in, “It’s all about…”
(Link removed to abstract of paper recently published in the Journal of Internal Medicine detailing the International Criteria for M.E.)
You can actually read it here:
(Link removed to a patient advocacy site that ran the full paper)
Here’s the CDC definition of “CFS”:
(link removed to the CDC page that defines “CFS”)
The head of “CFS” research at the CDC (William Reeves) told ABC News in 1996 that the primary outbreak of the disease that led to the creation of “CFS” itself in 1996—in Incline Village, Nevada—was ‘hysteria.’ (link to video available if anyone would like to see this) That followed his letter to the Annals of Internal Medicine in 1992 that claimed that what had occurred in Incline Village was ‘not the Chronic Fatigue Syndrome or any other known clinical entity.’
Both the CDC’s “CFS” definition and the newly published ME definition include post-exertional malaise as a key symptom. However, the CDC recommends exercise as therapy.
(link removed to the CDC’s “CFS Toolkit” page–anyone should be able to find these links I’m now removing with a search based on my descriptions with little problem)
The newly published ME definition suggests this is not such a good idea.
“Numerous papers document abnormal biological responses to exertion, such as loss of the invigorating effects of exercise [20], decreased pain threshold [48-50], decreased cerebral oxygen and blood volume/flow [51-54], decreased maximum heart rate [55], impaired oxygen delivery to muscles [56], elevated levels of nitric oxide metabolites [57], and worsening of other symptoms [58].”
Many of the symptoms listed in the newly published ME paper are detectable only using tests that the CDC regards as ‘experimental’ or ‘theoretical,’ and suggests they should not even be performed.
“A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS. These tests should not be performed unless required for diagnosis of a suspected exclusionary condition (e.g., MRI to rule out suspected multiple sclerosis) or unless they are part of a scientific study. In the latter case, written informed consent of the patient is required. No diagnostic tests for infectious agents, such as Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, Candida albicans, and Mycoplasma incognita, are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis). In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS. Other tests that must be regarded as experimental for making the diagnosis of CFS include the tilt table test for NMH, and imaging techniques such as MRI, PET-scan, or SPECT-scan.”
(link removed to CDC page on testing guidelines for CFS)
In 1995, Johns Hopkins researchers put 23 CFS patients on a tilt-table. 22 had an abnormal response.
(link removed to abstract from published study in the Journal of the American Medical Association; it was Peter Rowe’s study)
Yet the CDC says this test is not helpful for diagnosis. In the UK they don’t allow it to be used in “CFS,” either.
(link removed to transcript of BBC program where UK psychiatrist, frequent co-author of CFS papers with Simon Wessely, and significant contributor to the UK’s NICE Guidelines on CFS, Peter White, states boldly that he does not allow CFS patients to undergo a tilt-table test, on the basis that it’s ‘unpleasant.’ It’s also one of the easiest ways to detect objective biological abnormalities in CFS patients, who, in the absence of such markers, are often treated instead as patients with a disorder that is primarily psychological. Not mentioned in the Guardian piece is that the researchers in question downplay any suggestion that Neurally Mediated Hypotension and/or Postural Orthostatic Tachycardia Syndrome play a role in CFS. But obviously you all knew this, right?)
I suppose it wouldn’t be necessary; the CDC just last year asked if “CFS” is…a personality disorder.
(link removed to press release from last November announcing a CDC-sponsored study by asking ‘Is Chronic Fatigue Syndrome A Personality Disorder?’ Again, no mention of symptoms like NMH or POTS–just to stick to those two–in that press release)
Interestingly, the CDC says that swollen lymph nodes are one of the eight symptoms that may be present for a CFS diagnosis. Yet…a year ago they published a paper where they wrote that tender lymphadenopathy may signal the presence of a condition that may be exclusionary for a CFS diagnosis.
(link removed to Switzer et al, the CDC’s 2010 publication in Retrovirology claiming no association between CFS and the retrovirus XMRV…I’ll leave it at that)
This, of course, makes sense if CFS is indeed a personality disorder, or something that happens to people who have experienced childhood trauma (note that every study in the past few years undertaken by the CDC examines patients in Kansas and Georgia who qualify for a much looser criteria than the recently published ME criteria OR even the “Fukuda” 1994 criteria the CDC hosts on their website—they don’t even reference the “Empiric” criteria there).
(link removed to CDC page trumpeting their 2009 study suggesting that CFS is a result of childhood adversity and/or sexual abuse)
That would dovetail with the sort of research that Simon Wessely has done in CFS. He is the most-published researcher in the history of “Chronic Fatigue Syndrome.”
(link removed to PubMed search for “Simon Wessely Chronic Fatigue Syndrome,” displaying links to all of his papers)
If I had severe orthostatic intolerance, was missing nearly a quarter of the blood I should have in my body, had high titers on several viruses the CDC says don’t really mean much, low natural killer cell function, and abnormal response on impedance cardiograph—along with other, more subjective symptoms (those harder to objectively measure, you know, like pain, headaches, sore throats, cognitive difficulties, etc.), then I might be pissed at some of these researchers, too. Death threats? Of course not. That’s disgusting. But it’s also kind of unlikely, since nobody with this condition is really capable of inflicting any sort of harm.
Oh, wait. I DO have all that going on. I have had an abnormal response on a tilt table test, and I am actually missing nearly a quarter of the blood I should have. Yet the CDC thinks this might be a personality disorder, and so does Simon Wessely.
So I suppose I have a right to be pissed off, even if ‘death threats’ seems futile and stupid. It also, frankly, seems quite unlikely, unless you consider bedridden people sending emails and having the audacity to submit a FOI request a threat.
Yeah…it’s all about ME. Since we’ve been left here to rot, while the government studies ‘chronic fatigue,’ which is a symptom of many diseases. And funnels money to researchers working on all sorts of interesting theories about what causes it.
What causes the disease I have, not so much.
But I have every confidence that those of you who choose to weigh in on this knew all of this already. We’re used to people not giving a damn, so it’s hardly unsurprising.
Carry on.
The homosexual lobby was strong enough to get homosexuality removed from the DSM, so that it is no longer listed as a disorder, and they can claim it to be “normal,” and as one step in an inevitable progression once that lobby won, I note news about an upcoming meeting of various academics and doctors this week, supposedly to organize to get pedophilia similarly removed from DSM, so that pedophilia, too, can be declared to be a “normal variation.”
The AIDS lobby is very strong, too. and succeeded in quashing any attempts to track and treat AIDS as other communicable sexual diseases, Syphilis, for instance, had been by public health professionals i.e. talk to and test those who had the disease, find out every sexual partner they had and then track them down, test them, and ask who their sexual partners were, etc., and because this wasn’t done AIDS spread, uncontrolled, like wildfire.
The fact of the matter is that the spread of most AIDs could have been limited if homosexuals had stopped having unprotected sex, but they didn’t want their “lifestyle” restricted. Result–hundreds of thousands dead who didn’t need to die, and hundreds of thousands more needlessly infected.
Crystal–I don’t think hurling insults at those who you disagree with is an effective way to persuade them, nor do I think it effective to bombard them with technical material only intelligible to doctors and researchers in this field.
Of course. Anyone with a dissenting view should only absorb insults.
Besides, if I can take medication so I can sit up and type in the bed I can rarely emerge from, you know, how tired can I be anyway.
Right?
Nor is it effective to ignore the fact that my post makes clear that the researchers in question are not saying the syndrome is entirely psychological. But apparently, positing any psychological components is unacceptable to the people harassing these researchers.
Many physical ailments and syndromes have psychological components. There’s nothing unusual about that, and there’s nothing about it that precludes primarily physical causes for those ailments and syndromes.
And Crystal, I haven’t read every word of every comment here, but it’s my impression that no one insulted you. Words such as “crazies” and “nutjobs” in the comments were reserved for those people who threatened the researchers for being so un-PC as to suggest that they were any psychological components to the syndrome.
So what can you tell me about how much funding psychological research (primarily or exclusively) receives, vs. biomedical research (primarily or exclusively)?
Do you have any information on how much money is spent on ME/CFS in this country? (Hint: it works out to $3.64 per patient per year)
The CDC isn’t shy about claiming that the biological abnormalities that define ME are exclusionary for a CFS diagnosis. They do not recognize ME. Neither do insurance companies.
Compare the protocol for the PACE trial (published 4 years ago in BioMed Central) with the actual paper (published 6 months ago in the Lancet). It’s not that hard to spot the difference, or how they proclaimed success after producing results that showed degradation compared to what they had forecast in the protocol.
Did any of you listen to the recording of their press conference stating that they were proud to prove that Cognitive Behavioral Therapy is ‘effective?’ (yes, these are some of the same researchers who are allegedly the targets of these death threats)
Yeah, yeah, yeah. Mind/body. There’s always a psychological component. Cartesian dualism. Blah blah blah. That’s all they ever work on–check the research. Look up Peter White’s papers, or Michael Sharpe’s, or Trudie Chalder’s. Esther Crawley? She’s in the middle of a trial putting children through something called the Lightning Process. Look it up. Then come back & tell us all how all of this makes perfect sense.
In February a paper came out of New Jersey showing unique proteins in the spinal fluid of ME/CFS patients. It was the latest in literally thousands of papers demonstrating biological abnormalities.
Nobody cares.
Peter White just published another paper about childhood abuse a few days ago. Look it up.
That, of course, proves what CFS is. As they define it. But Peter White never looked for anything in spinal fluid. Never looked for viruses. Never will.
What a shock–patients are pissed off at being perceived as psych cases, and a few eternally bedridden people issue ‘death threats.’ What a shock. Well, they can always be sectioned there in the UK. But, again, you all knew about that, right? I’m sure you knew all about the UK’s Sophia Mirza–and Ryan Baldwin, of North Carolina, too, who was taken from his family because social services thought he was faking his illness, abetted by his mother.
Really, do you people have any idea what the clinical state of these patients actually entails? If you do, none of the ‘too-technical’ stuff I posted should have come as a surprise. If you didn’t, then it’s frankly remarkable, some of the stuff posted in response to this wildly distorted and exaggerated embarrassment to journalism.
Like I said, carry on.
In addition, if the framing of this story by the Guardian were accurate (i.e. ‘these researchers aren’t saying that CFS is entirely psychological; they readily admit that there may be a physical component’), then you would have a point. This is not accurate at all, except that they always include such quotes so they cannot be tarred with such a brush.
Go ahead & search for their CFS publications on PubMed & come back & tell me that 99% of their research is based on a model of CFS as either primarily or exclusively psychological in origin.
Seriously.
Simon Wessely never backed himself into the corner that people like Peter Manu or Edward Shorter (or Elaine Showalter) did.
Go ahead, take a look into it. Unless you’re willing to let one left-wing newspaper dictate your views on this topic.
You would hardly be unique in that.
So … trained professional researchers tasked with investigating this phenomenon have a) failed to come up with an etiologic agent, b) failed to identify a reliable diagnostic test, and c) question whether the phenomenon is in fact psychosomatic rather than organic in origin. That isn’t dispositive, of course; such researchers could be wrong, have been wrong before, and doubtless will be wrong again in the future. Still, food for thought: maybe they’re right.
Ah. So this is personal, not an abstract intellectual point. Color me surprised.
No clearer cri de coeur can be imagined. Get help. Seriously. Psychological help.
For the record, before taking this seriously I’d want to see data indicating that chronic fatigue syndrome conformed to a suitably extended set of Koch’s postulates. Until then … I’m skeptical. Not about your suffering, or those of other putative chronic fatigue syndrome sufferers, but about the organic etiology of the syndrome.
When a person has something physically wrong with them, such as chronic fatigue, and the doctors cannot find any obvious cause, it must be a very frustrating experience. As if the medical professionals either don’t care or are just cruel. Which seems to be the conclusion of these activists.
CFS and fibromyalgia are as baffling to doctors as to the sufferers. If doctors could point to some definite diagnosis such as, a virus or a genetic problem and then say, “There is no cure, only management of the condition,” maybe the patients would feel better or at least not feel quite so desperate.
The big problem is that so many CFS and fibromyalgia patients go from doctor to doctor looking for help and all they get is, “I can’t find anything worng with you.” It creates just plain frustration and anger. The refrain is, “You can cure some cancers, fix heart problems, reset broken bones, graft new faces, but you can’t tell me why my life is a constant round of pain and fatigue. Why?”
All that said, attacking the researchers who want to get to the bottom of the problem is not going to get any better results. Joining support groups and finding a sympathetic doctor can improve the sufferers lives. If they can accept they have a chronic, uncurable condition that must be managed, it may help them feel somewhat less desperate.
We have something in common. I’d kind of like to see data suggesting a psychological basis for the following:
High titers for HHV6, HHV7, EBV, Mycoplasma, Parvovirus 19, CMV, Coxsackie virus, Ross River Virus, tc.
Altered cytokine profiles following exercise, and V02 Max scores as well
Abnormal SPECT scans, impedance cardiograph, tilt-table testing, NMH/POTS, low circulating blood volume
You show me that these issues–commonly found in ME–have a psychological basis, and I’ll never say a word on this subject again. As a matter of fact, I’ll send Simon Wessely himself a box of chocolates.
Deal?
SPECT scans of what? With what isotope? Bound to what ligand, if any? The statement is meaningless without this information.
I’m a chemist, not a physician, but these all look to me like phenomena influenced by the autonomic nervous system. In any case, the psychological component in chronic fatigue syndrome is apparently a given, so the burden of proof is on those asserting that the psychological component does not alone suffice to explain the data.
To pontificate far beyond my expertise, I’d point out that psychological phenomena commonly manifest themselves physiologically. The heart rate, breathing rate, and blood pressure of a claustrophobic in an enclosed space are probably off the charts, but that doesn’t mean that enclosed spaces cause those phenomena in an organic sense.
Take a look for Goldstein et al, “Regional cerebral blood flow by SPECT in chronic fatigue syndrome with and without fibromyalgia syndrome.” Arthritis & Rheumatism, 1993. Beyond that, evidence is probably mostly anecdotal, admittedly.
Tell you what, go to the NIH Project Reporter, and take a look & see what the NIH actually funds. Studies involving SPECT scans aren’t exactly high on the list. Childhood adversity, CBT, graded exercise? Money seems to flow for that pretty effectively. I guess that means that I’m just…wrong. Okay. So, then:
If only Koch’s Postulates will satisfy your skepticism, then surely you could line up a volunteer? Shouldn’t be too difficult to match up blood type with an ME patient.
You have data on claustrophobia that demonstrates autonomic dysfunction as well as a significant viral component? Data that shows such dysfunction beyond exposure to claustrophobic conditions?
But, hey, I must be saying there’s no psychological component here. Because I’ve never heard of secondary depression. Never have actually went to every psychologist, psychiatrist, neuropsychologist, etc., that any and every medical professional has wanted me to see. Because saying no to such things would be such a good idea.
I must just be ‘anti-psychiatry,’ because nobody I know could have ever possibly benefited from it. I don’t suppose it’s possible that I count a good number of mental health professionals in my family and social circle. Nah. I’m just the sort to prefer wallowing in self-pity and denial rather than make an effort to show that such an approach is simply inappropriate.
Dropping the sarcasm for a moment, unless you have reason to doubt what I say, I will tell you straight up that every single mental health professional I have seen has affirmed that psychological help is most assuredly not what I am in need of. I’d never offer that as a personally held opinion, but i will mention it as it is a matter of record so far as professional opinion, and I’ve lost count at this point in my efforts to demonstrate to those who believe otherwise that this is not an effective or appropriate therapy for ME.
Tell me, were you also pontificating beyond your experience when you suggested I seek psychological help? I mean, you seemed quite comfortable diagnosing me over the internet. Especially for a chemist, and all.
One of the bugaboos of this false conflict is that ME patients are accused of belittling mental illness by suggesting that their conditions are not actually rooted in psychological causes. Good grief. Yeah, because the plight of the mentally ill in society isn’t a tremendous injustice in itself. Sure, we love to pile on.
The problem is that this is a physical disease with psychological trappings. You obviously think it’s the other way around, and that’s fine. We’re used to that. Most wouldn’t go to therapists when directed to. I offer no such resistance, and haven’t, not one time, in the years I’ve been sick. What would be the point? People will believe what they want. Reeves/Straus/CDC research good, Bell/Cheney/Klimas/Peterson/Komaroff research bad. In the case of this illness, people believe that psychological therapy is appropriate. But I will tell you straight up that it is no more appropriate than if it were the only therapy offered to someone with a broken leg. Yet little is thought of the idea that psychological therapies are all that is appropriate in ME.
And, because of the influence of researchers like Simon Wessely and Peter White, according to the NICE Guidelines, that’s all that’s available. Period.
Move along. Nothing to see here. Except a bunch of dangerous nuts threatening benevolent scientists.
With all due respect, you do realize you come across as, shall we say, a bit overwrought?
Over the last 30 years a plethora of new syndromes and ailments have blossomed. Few of these new ailments have any basis in hard science and must therefore be psychological in nature, which means they spring from brain chemistry and fertile imaginations (a feed back loop). Please note I am not suggesting these new ailments are not real to those who suffer from them, but rather I am stating (until proven otherwise) there is no other explanation than mental illness.
Chronic fatigue without arduous physical activity? That is not a physical disability but instead is a mental disability.
Yeah. And?
I’m bedridden for more than 10 years, with a good number of objectively observed biological abnormalities, and every time there’s a garbage piece like this a whole lot of geniuses chime in on how we’re all lazy, tired, neurotic fakers. Now we’re terrorists.
I tried to submit links to back up each and every point I made in my initial post, but it got caught in a links/spam filter, fairly predictably. I’m not sure it was realistic to expect I’d so much as mildly alter any preconceived notions here, let alone change any minds…but given the political slant, it seemed worth a shot.
It’s amazing to me how evidence–and, again, I referenced government sites and peer-reviewed medical journals, not blogs–can be so roundly ignored if/when it comes into conflict with strongly held notions.
I mean, everyone knows CFS is a psychological disorder. Just ask anyone. Viruses? What viruses?
I have every confidence that you would not be overwrought if you dealt with a disease that receives almost no funding, in spite of it being debilitating to a degree I won’t waste words on.
Congratulations for that.
Crystal Podhoretz Says:
…Now we’re terrorists.
Afaic anyone who uses plausible death threats to pursue political/social/cultural ends qualifies as a terrorist.
Crystal . . .
As others have said, your long comments and snarky tone make your arguments difficult to read.
HOWEVER, I’ve had fatigue problems in the past, and I found two obscure causes: (1) sulfites in preserved foods and in various liquors, and (2) chronic rhinitis, which can be alleviated with a prescription nose spray.
I’m sure your case is quite different, but I mention mine because sometimes it helps to think about different kinds of causes for your chronic fatigue problem.
This is well established fact that a lot of somatic disorders have specific personality disorders associated with them. It is also known that hysteria can mimic a lot of somatic conditions and reproduce their symptoms. It is also well established fact that immune system in depression patients is suppressed too, so higher virus titers in depression patients is not something unexpected and tells nothing about etiology, just as well low counts of immune cells in blood stream can be purely psychosomatically induced.
There is nothing insulting or demeaning in proposing people to seek psychological help, consultation and therapy. With so widespread interaction between somatic and psychological conditions many clearly biological diseases can be successfully treated by psychologists and even “faith healers”. I myself witnessed how a profuse arterial bleeding was stopped in minutes by a spell of a country “witch”.
Well, that’s great, but ME is not depression. And in spite of the name, it is not ‘chronic fatigue,’ either.
The immune system is seen as upregulated, not suppressed. Most of us, for instance, don’t come down with colds. Ever. This explains why the drugs considered to be most promising for this condition are immune system modulators.
If this were depression, then exercise would be a logical therapy. It causes relapse–the opposite of the effect in depression.
But you all go on believing what you want to. I’ll leave you alone to it. Except for one last thing.
You can keep your impression of Simon Wessely based on the Guardian article, or not. But you just might want to look at one thing in particular with regards to the Professor.
In 1988 a truck carrying aluminum sulphate discharged 20 tons into the drinking water for a UK town named Camelford. Google a piece from the UK newspaper the Daily Mail from 2007 called “A lethal cover up: Britain’s worst water poisoning scandal.”
Then take a look for “The Legend Of Camelford : Medical Consequences Of A Water Pollution Accident,” a paper co-authored by Simon Wessely in 1995 and published in the Journal of Psychosomatic Research.
I’d quote from the Daily Mail piece, but I wouldn’t know where to begin, or where to end. I’ll leave it to anyone who’s actually interested enough to take a look at the paper to draw their own conclusions.
Maybe someone will be sufficiently interested to actually take a look at Wessely’s publications on PubMed.
Maybe someone here will be sufficiently interested to take a look at what the Science Media Centre actually is.
Or what you find if you look up the director of the SMC, Fiona Fox (quoted in the Guardian piece), on Wikipedia.
Oh, heck, I’ll copy the first sentence on her Wiki page:
“Fiona Fox (born 1964) is a British writer. She is the director of the Science Media Centre and a former leading member of the Revolutionary Communist Party.”
Another:
“She has been accused of genocide denial in relation to a report she wrote in 1995 for the magazine Living Marxism on the violence in Rwanda.”
Do with any/all/none of this as you wish. I’m not making this up. If you want to believe Simon Wessely is the noble scientist the Guardian casts him as, well, it’s pretty clear nothing I say makes a difference here anyway.
Science used to be about the search for truth; now a lot of people seem to think it’s about validating their own agenda. Many people also seem to think that a solution should always be found, and soon–and that if it isn’t, scientists are either corrupt or lazy, or both.
its about validating as that is the only purpose of science in scientific socialism…
Trofim Lysenko be proud
at what point do we actually think about what we say beyond the first sqisshy feeling we like?
i mean what does everything in the state for the state and to the state mean? it means exactly what it says and it does not mean that one gets to arbitrarily compartmentalize
if everyting is from the state for the state and to the state, then what is science for in this brave new world? an independent investigation of facts for progress in capitalism? i mean thats what everyone keeps imaginging cant be different.
just look a these bimbos from the new your times and how they cant concieve that a president and a despot are different things.
not to mention the desire to make it a one party race based economic hybrid of capitaism and socialism… nazi facism actually…
we are steeped in a zeitgeist where people such as this get to imagine president is king (but with the added narcissistic benefit that its an elected king!)
If I Were President…
http://www.nytimes.com/interactive/2011/08/21/opinion/sunday/20110821_Kornbluth_President.html?src=me&ref=opinion
from dyson saying we need more inventors produced in teh schools, when you can have a billion of them… but if there is no resources or capital for them or place to bring the work, what does it matter?
others talk about huge programs as if there is no house of representatives tasked to make financial decisions they have to deal with.
and sadly they are often inane and not better than interviewing a third grader.
Andrew Weil of the cornell weil center, and picked for being apolitical (you can have spam spam, eggs and spam, which only has a little of it)
he says, he is powerless, and americans should make a new party!
steven haddock thinks he can select a first lady in Jane Rosenthal….shows you what a landscape artist can do, eh?
patty ryan madison would “I would invite all of the members of Congress to join me in an improvisation retreat.”
From personal observation, supplemented by a lot of reading over the years, it seems to me that the mind and body are so intertwined that all physical ailments have a psychological component and all psychological ailments have an influence on the body. Trying to say that ailments are strictly physical or strictly psychological, or that the physical doesn’t influence the psychological and vice versa is to artificially limit and to blind oneself to a good half of the available evidence.
My totally unscientific guess is that the psychological aspect of any ailment, and perhaps many injuries, is actually more important than the physical.
It seems to me that no matter what the ailment or injury, with the proper mental attitude and will much can still be accomplished, but that without that will and attitude, little can.
When learned western doctors volunteer in the Congo or Sudan, i suspect they must have an experience akin to treating hominids on another planet. Because the one thing they probably won’t find there, are people who think they are somehow owed the time and labor of another human being.
Perhaps fortune cookie philosophy, perhaps not.
Harsh as it may be, life is not fair, and some of us are dealt good hands and some of us are dealt shitty ones but, nonetheless, we all have to play our cards.
It is how you play the game with the cards you have been dealt that is important.
I hesitate to dip my toe into Crystal’s quagmire, and will just say that anyone with a modicum of physiologic knowledge finds her assertions devoid of substance. That’s despite her citations of junk like the SPECT study of 1993, and her claim of lacking 25% of her effective circulating blood volume.
These people all achieve the secondary gain Freud described in his study of hysteria. Crystal is apparently bedfast, thus waited upon by others. I’m hardly a fan of Freud, but even he could make the occasional factual observation.
The tread was efficently highjacked by a hysterical woman, obviously a desperate attention seeker, so let us assert what we DON’T discuss here: etiology of ME/CFS, efficiency of behavioral rehabilitation of the disease, scientific integrity of Simon Wessely, of King College Center and of medical community of UK in general. All these things can be interesting in themselves, but the topic at hand was behavior of “activists” and the moral climate in which scientists work. This is not a medical blog, and most commenters here simply know nothing about ME/CFS and related controversy, but this all is completelly irrelevant. To harass and terrorise a scientist is wrong absolutely, whoever would turn right eventually in controversy involved. What should be worth of our attention is the place of science and scientists in modern society and the role of so-called activists in scientific discussions and popular presentation of scientific research. In my opinion, laymen simply should play no role in scientific debates, and the fact that often dare to do otherwise is worrisome in itself. Politicised science is a junk science, and everybody without special knowledge and training trying publicize his ignorant opinions is either a fool or mentally disturbed person.
Well said, Sergey.
I’d add that those emotionally invested in a topic are likely to shed more heat than light on a subject.
Well, if it were a virus, it would be treated, and then where would the welfare check go to? Sorry, the “dole” as it is called across the pond.
“Mystic Fibrosis” Untestable. Untreatable. The only thing it responds to is love and tax dollars.
It’s not a disease, It’s a hobby…. A former friend had a wife who was A Chronic Lyme Suffer-er-er. Most tedious woman in the world. She couldn’t eat any food-no gluten, no dairy, no meat…. All from Lyme Disease.
I finally kicked them out of my dinner party. STFU. We all got problems.
Back in the day when I studied psychology, the pshrinks were still, some of them, saying the schizophrenia required three to five years of depth psychotherapy. Some of the motivation was actual belief, I suppose, or belief momentum. Some might have been the personal hit taken when replaced by a pharmacist (I exaggerate, pshrinks are still necessary but insufficient by themselves), and part might be the reduction in billed hours.
To show how mean institutional staff were, they told us some claimed they could smell schizophrenics, or had taught their dogs to pick them out. Smell is chemistry. That the staff was accused of being mean in this fashion–because they actually could do it–did not indicate to our profs that there was any, you know, actual chemistry issue.
In anthropology, we learned that voodoo death can actually work, if the spelled person believes sufficiently. Such terrible fear overstresses the adrenals and various physiological processes begin which lead to death.
As others have said, the connection between the mind, the mental and emotional state, and the physiological state, is strong and we have the cart/horse question on top of that.
Clinical depression leads to fatigue, or, to put it more clearly, feelings of fatigue. Last I heard, there is no clinical indication of physical problems. When you’re fatigued, when things that need to be done are not getting done, or only a few are, at the cost of immense self-motivation, one is likely to be depressed. As others have said, you have a feedback loop. If that goes on long enough, is there going to be an actual physiological change?
On top of that, CFS, not having a clinical presentation, is a problem for disability income insurers. “I feel bad,” is not traditionally considered to be conclusive at claim time. But that’s all there is.
I practice disability insurance law, and this issue comes up quite frequently as insurers maintain CFS (or fibromyalgia) is either not real (and so a claim based on it is denied) or it’s all psychological (and so a limitation on benefits for mental health disabilities becomes applicable). I have had many clients who were thoroughly frustrated by the lack of effective treatment, exacerbated by some insurance company suggesting they’re trying to commit fraud because they have the temerity to submit a claim.
Without going into detail I have neither the time nor the expertise to go into, I suggest one problem is the either/or approach to this. Certainly conditions which might appear to be psychological can be a function of organic issues with the brain (i.e. one theory about fibromyalgia is that the brain chemical or brain circuitry is compromised, which effects the perception of pain, in a way which is very, very real to the patient). In a discussion over at Althouse about this one physician commenter (“Pogo”) posted a link to this study, which suggests (according to the abstract) there’s an organic basis for CFS, and it isn’t fake or imagined or anything like that. Even at that the same study suggests cognitive behavioral therapy is an effective component of treatment (just a component, not effective in and of itself). That one aspect of effective treatment is psychological does not rule out the proposition the condition in question is a function of a real organic condition.
As Pogo explained: “That is, the amygdala and the rest of the fight-or-flight system is enlarged at the expense of the prefrontal cortex, which atrophies.
So this is a demonstrable physical abnormality. Not imaginary, and not bullshit.” and:
“‘The lateral prefrontal cortex is an essential node of the network subserving executive functions…
Lesions in lateral prefrontal cortex often lead to significant reductions in the generation of appropriate goal-directed voluntary behaviour …which can clinically manifest itself as apathy….’
So, yeah, their brains are messed up.”
In my amateur experience, watching from my studies in the mid-Sixties, more and more personality issues are being found to have organic connections if not causes.
Problem is that the question of which came first, personality issues or the organic issue. Which caused the other, or did they appear in parallel due to some other cause?
Calling it ME doesn’t make it so. Name was coined about 40-50 yrs ago, way before CT or MRI. I remind readers that MRI can show lesions so small we still don’t know what they mean. Googling yields lots of victim sites, but I cannot find any data on MRI findings, none, spinal fluid studies or anything else material in support of “encephalomyelitis”, which signifies an inflammation (itis) of brain (encephalo) and/or spinal cord (myel).
Myalgia means muscle pain/ache, nothing more or less.
ME is a big scientific-sounding name in search of an objectively demonstrable abnormality in the organ system allegedly involved. Better to stick with a simple descriptor: CFS.
Attention Crystal: “Go sell crazy somewhere else. We’re full up around here.”
Folks: I must come to Crystal’s defense here.
I too have been suffering from CFS, in my case since late 1988. It’s mostly in remission now, thanks in part to nutritional supplements. But I cannot forget the agonizing years in which I went from doctor to doctor, pleading with them to run any tests they liked on me to explain my symptoms. I was told, almost without exception, that since they didn’t know what was wrong with me, my problem must be psychological. (The doctor who first told me about CFS, after excluding everything else he could think of, was the sixth doctor I went to.)
It’s difficult to explain how infuriating this was and is. I know, just as I imagine Crystal does, that my symptoms are physical, not psychological, and that they are quite real. To us, it feels like being told, repeatedly, that a broken leg is all in our heads, and that all we need to do is resume running and jumping on that broken leg and all will be well.
I did in fact submit to a thorough psychiatric evaluation, which resulted — as I expected — in a diagnosis that I was NOT clinically depressed, was NOT suffering from any particular psychiatric illness… but that there was some (understandable) secondary depression involved. (If you suffered from an illness everyone told you was imaginary, for years and years, you’d get depressed too.)
I don’t condone terrorism in any form. But I suggest you listen to what Crystal has to say, rather than complain about the manner in which she says it. Her frustration is all too familiar to me; during the years when I was bedridden, I sounded pretty much the same.
respectfully,
Daniel in Brookline
Richard Aubrey said, “In my amateur experience, watching from my studies in the mid-Sixties, more and more personality issues are being found to have organic connections if not causes.”
There is a psychiatrist, Daniel Amen, who uses SPECT scans to diagnose brain abnormalities. He claims to be able to help people with ADHD, depression, Alzheimer’s, autism, drug/alcohol addiction, and even weight loss by finding out which parts of their brains are functioning abnormally. He has his detractors, but his web site is interesting and you can see many examples of brain scans which show brain malfunctions. With proper treatment the brain functions can be improved. He has written a book, “CHANGE YOUR BRAIN, CHANGE YOUR LIFE,” which explains much of his approach to diagnosis and treatment. If CFS is a psychosomatic problem, it would seem that his techniques could show that and show a path toward treatment.
For anyone interested in this, his web site is here:
http://tinyurl.com/c87twn
No, Daniel, with all respect, I submit that docs not being able to name a diagnosis is not their fault nor shortcoming. No patient likes being told,”I can’t find anything wrong with you.” But that’s the honest answer. Now that it’s been clad in a fancy label-ME or CFS- may make one feel better, but the tag is pointless, and in the case of “ME” is, quite painfully, hokum.
That sufferers are sitting ducks for pseudoscience and nostrums is not the docs’ fault.
This article in the Wall Street Journal might enlighten you somewhat – if you care to be enlightened, that is – it reports on a recently published study that found distinct cerebrospinal fluid proteomes in CFS.
http://blogs.wsj.com/health/2011/02/23/a-step-closer-to-tests-for-chronic-fatigue-syndrome-and-lyme-disease/
And here is the study itself: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287
Here is another recent study that validates a previous study carried out on adults, where the white blood cells were found to be damaged: http://www.meresearch.org.uk/research/projects/children.html
During my life I witnessed two major medical science controversies: the first about the role of viruses in causing cancer in humans and the second about relative roles of viruses and autoimmune reactions in neurodegenerative diseases like multiple sclerosis, myastenia gravis, motor neurone disease and so on. Each was lasting for 4 decades and the second is lasting now. Being involved in cancer research and immunology myself in leading Moscow research centers, I read a lot of literature and was following the debates long after I switched career. Such problems are incredibly difficult and complicated, their theoretical understanding is still very poor while billions dollars were invested and some riddles resolved, but this only revealed the enormity of our ignorance. Science does not hold a magic wand to solve all our problem at short notice, and however crushing this revelation is to hopes of desperate sufferers, it should be swallowed.
1/3 of sufferers also has this co-morbid condition that is very disabling in itself: http://www.meresearch.org.uk/research/projects/potsincfs.html
After being prescribed anti-anginal medication from my doctor, I can confirm that I am more mobile and can stand for a greater amount of time before becoming ill. Although, I still have severe low blood pressure which often registers around 70/40. I am housebound but no longer bedbound. If only more doctors would take this co-morbid condition seriously, more people would have a better quality of life.
Just to clarify, before being prescribed anti-anginal medication, my heart rate would increase to over 140 beats per minute on standing. This was just on standing, not moving or walking, simply standing still. Now, imagine the affect on my body when I tried to do anything else. I was so severely ill that I was unable to bathe or groom myself.
For more on P.O.T.S: http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
Just to be clear: I have nothing against doctors who test me and cannot find anything wrong. I do have a problem with doctors who insist that anything they don’t understand is psychiatric in nature… which was the case for most doctors who saw me.
I used to joke that, among the known symptoms of CFS, two important ones were usually omitted: poverty (because CFS patients have a very hard time earning a living), and suspicion of doctors (because we see all too many of them who are nowhere near as smart as they claim to be; we are forced, as Crystal was, to learn more about the CFS research and literature than our doctors are willing to do).
Two anecdotes my be illustrative here. A friend with CFS used to joke that doctors who claim CFS doesn’t exist must have been playing hookie from medical school. Indeed, once he faced a doctor who flatly told him that there was no such thing as CFS. He patiently explained to the doctor that CFS was recognized by the CDC, the NIH, the WHO, and many other medical organizations; the doctor insisted that there was no such thing, and he ought to know, since he was the doctor. The CFS patient then said, “Okay, the Physician’s Desk Reference on your shelf there is the 1993 edition; I think it’s on page 497 in that one.” The doctor, dumbfounded, took down the book, looked at that page, found the reference, and said, “Oh, right… I remember now, some of my college buddies and I blew off class one day, it must have been covered then”.
(Not that I’d claim medical students must never skip classes. But is it really fair for a patient to have to teach his doctor, just in order to be taken seriously?)
Another friend had a doctor tell her that, since there were no blood-borne markers for CFS, it simply did not exist as a physical illness. She promptly told him to put his money where his mouth was, and offered to do a mutual plasma transfusion with him, on the spot. (Of course, he declined.)
As the saying goes: what technical term do we use to describe the guy who graduates dead last in his class at medical school?
And let us not forget that patients with ME/CFS have recently been banned from giving blood for life in many countries including the UK, US, Canada, Australia, New Zealand. If it is a psychiatric condition why the need for a blood ban?
A precaution. Because there can be a virus still unknown to science, so we have no test to detect it. It may be news to some, but overwhelming majority of viruses are still unknown, because we do not know how to cultivate them in laboratory. And in case slow infections that need years to develop the titres are so small that only immunologic markers are sensitive enough to reveal their presence, now or in the past. But without cultivated virus we can not develop immunological test, and without test we can not know what to cultivate.
P.O.T.S.
Ref blood. Doing an advotacus diaboli here: If, speculating, a psychiatric condition is so severe and long-lasting as to cause self-perceived [made that up] physical symptoms, it may cause physiological changes. And the current shortage of hemophiliacs reminds us not to be casual about such things.
The Red Cross told me to go away after about 110 donations. Some liver function. Doctor looked at my blood study and could find neither the liver function nor anything that might have caused it.
So, after some years, the Red Cross called me to do pheresis (sp). I asked about my affliction. “Oh,” the lady said after checking, “we don’t test for that any more.”
It would be one thing for a doctor to say he can’t find anything wrong with you and another to say you have nothing wrong with you. The latter is going to absolutely annoy the afflicted. Whether they’re hypochondriacs, reallly sick, or munchausening their ways through life.
Blood transfusion is inherently risky procedure, so it make sense to insist that only healthy people are allowed to be blood donors.
Alas, the life long blood ban in the UK was only recently imposed – after the US Government confirmed that MLVs were indeed found in the blood of ME/CFS patients. The scientist involved in validating the earlier findings was the same scientist involved in discovering Hep C.
Of course, the jury is still out as to whether we do in fact carry a retrovirus in our blood. We are waiting to hear of the results of two important studies coming from the US.
For those unfamiliar with retroviruses – there are 3 main types that cause ill health in humans – HTLV (which causes leukaemia) HIV (which causes AIDS) and the newly discovered XMRV (which is linked to prostate cancer and ME/CFS). A retrovirus is very different from a virus in that it writes itself into our DNA so that every cell carries it. A retrovirus is for life. There is no way you can kill it. A retrovirus makes the most sense in terms of ME/CFS in that a retrovirus switches on dormant viruses that wreak havoc on the body in many different ways; note the many different viruses that have been implicated in the past. I might also add that people do die from complications arising from this condition just as those with AIDS die from complications.
Good luck to you, POTS, if you think the PLoS article repesents good/sound medical science.
Daniel- there is nothing on diseases in the PDR; never has been. It’s only about medications, all in FDA-approved language.
Don Carlos
I was killing some time in an ER once, ribbing the nurse about the coffee rings on the nurses PDR.
She gave me a newer one to read. Fabulously interesting in terms of contra indications, inadvertent near-synonyms and what not.
But there was a section on herbals which seemed to have come from the manufacturers’ brochures. Glossy paper. These things will cure AIDS, fatigue, impotence, and various other weird diseases. Wondered what that was all about.
The PDR is simply a compilation of FDA-approved package inserts, by manufacturers, for professionals, on prescription drugs. Thus the occasional “Black box” warning in the adverse effects section for some Rx drugs. PDR also prints guides to OTC drugs, but again, FDA-approved in every case, down to every a, an, and the. PDR is sent free to professionals yearly. Its photo section is useful for identifying pills.
Anything on herbals is trashed on receipt by almost everyone. I’ve never seen nor been moved to see such.
Daniel,
Decades ago in grad school I came down with what the doctor initially thought was mono. He changed his mind but did not give an alternative diagnosis.
Since then I am out of it for maybe a two-week period every couple of years or so. Therefore I am entirely willing to believe that a physiological invader plays an essential role in some CFDs. I’m also willing to believe that a Nobel awaits the people who identify the first such mechanism.
As for Crystal, she might have a claim on my sympathy in the sense of ‘to understand is to forgive’–but not on my attention.
@ Don Carlos – I very much doubt that you have the authority to say so.
@ Don Carlos – or the knowledge.
@ Don Carlos – you’re flippant, dare I say it ‘uneducated’ comments don’t impress me in the slightest and only serve to make you look incredibly silly.
@ Don Carlos – Why the aggressive responses? One would almost think you have a vested interest in this? I want to get better, that’s my motivation— what’s yours? Why do you feel the need to pound this archaic and refuted view of the psychiatric lobby? Anyone who believes this illness – and I’m talking about genuine, neurological ME, not chronic fatigue, burn-out or depression, but genuine ME – has a psychiatric basis, needs to pick up a medical journal or two and do some reading. We’re not living in the 1980s anymore and you do yourself no service spouting ill-advised, and scientifically refuted views. I have ataxia, myoclonus, positive romberg response, slurred speech, tremulous and POTS to name but a few symptoms. I do not, nor have I ever had a psychiatric condition. I’ve seen professionals who have told me I’m perfectly sound mentally – ie NO MENTAL ILLNESS – and need help for my physical needs only. Unfortunately, in the UK we are only offered CBT, GET and antidepressants. How will they help me with my ataxia and slurred speech? Seriously – get an education. Listen to sufferers, read some of the 5,000 published papers that show this is a physiological condition. Then look at the papers that imply a psychiatric origin. You’ll notice that it’s the same group of people who publish – they back up their own assertions with references to their previous papers and infiltrate government agencies and news media, using their links and connections to propagandise the illness. They even tried to steal the WHO logo for their work and claim that the WHO had re-categorised it as psychiatric. Perhaps you didn’t know that ME has been categorised by the World Health Organisation as neurological since 1969. Nope, it’s not categorised as a psychiatric condition, nor has it ever been so. You are ill-advised, sir.
We may sound impassioned to you, but, when you see yourself deteriorating daily and don’t receive appropriate testing or medical care; when you watch your friends die young and wonder how long it will be until it’s your turn, then you will begin to understand how desperate many of us have become. In the past year, alone, we have lost 4 of our online friends and one was only a teenager. Did you know that many people with ME go on to develop the rare Burkitts Lymphoma? Did you know that many die of heart failure in their twenties and thirties? Did you know that they have seizures and paralysis?
As long as the psychiatric lobby continue to play this deadly game our suffering will continue. 17 million worldwide, 250,00 in the UK alone. Do a little research about this group of psychiatrists, known as the Wessely school. You’ll soon find their vested interests – Unum, DWP and The Scientific Media Centre – New Labour set up this centre to be a point of call for journalists when science hits the news. Their aim is to ensure that when a major science story breaks, they can quickly provide news desks with the appropriate information and a list of scientists available to comment.
At the centre of this is a team of experts who sit on the Science Advisory Panel. Each of these experts is responsible for a particular scientific area depending on their own expertise. If you take a look at the link below you will see that a powerful proponent of the psychiatric paradigm (ie Simon Wessely) sits on the panel. Members associated with this school of thought do not believe there is a viral cause for ME/CFS. Wessely is the media’s ‘go-to’ guy when ME/CFS hits the news. I hardly need to point out the difficulties that might arise because of his position.
Incidentally, Simon Wessely has a new book about to be published and he is using this story as a means to publicize himself.
I don’t condone death threats, but do believe this man is standing in the way of our cure. He’s been made very wealthy peddling his wares and I think it’s time he stepped aside to let the real scientists do their work.
http://www.sciencemediacentre.org/pages/about/sap.htm
And the connection between Fiona Fox (she set up the Science Media Centre) and Wessely – well they were both in the Revolutionary Communist Party together.
The only thing these patients/advocates/activists/terrorists actually want is for state-funded investment to be evenly distributed between biomedical and non-biomedical studies. That’s it. Period. Nothing else (except perhaps consignment of the very silly name ‘chronic fatigue syndrome’ to the dustbin, but I could even live without that).
To understand why such hysterical stories make it into the press, you need to do what you smart people have learned from the cradle. Follow the money.
Where are the funding dollars are going, and why?
You live in the land of Medical Insurance, so you know that mental health claims are far, far more easily thrown out than those for diseases with a biological etiology. 1-4m Americans have ME (actually, given the wide definition used, it’s likely that 3 out of 4 actually have another condition that’s currently going undiagnosed because of that wide definition. So, let’s say 1m have ME. That’s a lot of medical insurance dollars. And that’s one part of the ME jigsaw.
I am in the UK, where the state department responsible for paying benefits to sick people – the DWP – was so desperate to label this condition psychological that it did what no other government department had ever done before. It part funded a medical study. The PACE trial was designed to ‘prove’ that CBT and GET (counselling and exercise) work for ME. They don’t, and the study ended up proving just that. Not good for insurers and the DWP.
Nevertheless, the little state funding for ME that exists is still going 100% into behavioural/psychological studies.
This is astounding when you know that ME is listed as a Neurological condition by WHO (and has been since 1969, with the invented term ‘CFS’ tacked onto it in the index).
It is even more incredible when you know that there have been more than 5,000 peer-reviewed scientific papers published so far which point to a biological etiology for ME. It makes you wonder just who is getting desperate to make the public believe ME is psychological, and what they will do to achieve this. Maybe run a smear campaign against the patients?
As to ‘terrorists’ – if someone is going to publicly accuse a group of patients of being terrorists in a newspaper or blog, I would hope they had asked for more proof than a few letters from frustrated patients.
I hope they would have carried out some good, old fashioned journalism and sought out a corroborative quote from the police protecting the ‘victims’.
I hope they’d have done more than ‘churnalism’ of stories from two British press houses which have strong financial links to Medical and Permanent Income insurer Unum (Guardian Group Newspapers) and Big Pharma (James Murdoch of that eminently trustable company, News International, sits on the board of GSK).
Aside: Wessely asks why it would be relevant that he has links to Big Pharma. Well, did you ever see an elderly person with autism? ME? no? Did you ever stop to think why that is? Can you think of something that Big Pharma introduced in the 1930s that went global in the 1950s? And did you note which UK newspaper groups buried the messenger who announced some research on autistic children that had had the temerity to join the dots? Food for thought. /Aside
Most ME patients are either housebound or bedbound. Rhe notion that they are running about with knives and explosives is risible.