Saturday, December 31, 2011

Corporate Control of People with Disabilities | #Occupy at Home

 
 
* * *
Good article for those who think that we just get handed government assistance by asking for it.  Describes the hoops you have to jump through to get anything at all.

Let's hear it for the girls!

"When I was a student at Cambridge I remember an anthropology professor holding up a picture of a bone with 28 incisions carved in it. "This is often considered to be man's first attempt at a calendar" she explained. She paused as we dutifully wrote this down. 'My question to you is this – what man needs to mark 28 days? I would suggest to you that this is woman's first attempt at a calendar.' It was a moment that changed my life. In that second I stopped to question almost everything I had been taught about the past. How often had I overlooked women's contributions?"—Sandi Toksvig
 
In the history of CFS, it will be WOMEN'S contributions that tell the story -- while the men are obfuscating and politicking, it was Elaine DeFreitas and Judy Mikovits working quietly behind the scenes to find the truth.  THANK YOU, LADIES!
 
 

Friday, December 30, 2011

How Doctors Die - Not Like The Rest Of Us

How Doctors Die - Not Like The Rest Of Us

It's not a frequent topic of discussion, but doctors die, too. And they don't die like the rest of us. What's unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently. Of course, doctors don't want to die; they want to live. But they know enough about modern medicine to know its limits. How has it come to this—that doctors administer so much care that they wouldn't want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.
Ken Murray MD, Clinical Assistant Professor of Family Medicine at USC, Zocalo Public Square, Nexus

The Price Tag on Teaching Compassion = $42 Million

 
Based on a horrible experience Carolyn Bucksbaum had many years ago when her doctor dismissed her intuition about her medical condition, and a second and ongoing experience over the next many years when she worked with Dr. Mark Siegler at the University of Chicago Medical Center, Mrs. Bucksbaum decided to do something to be sure other patients, in the future, would not have to put up with any more arrogance from medical providers.

And to those points, I say "Hooray! Thank you!", and, "I hope the lessons you impart can spread to every other medical student and doctor who can possibly benefit from what you will teach them!"  Further, I hope those lessons will be taught (and perhaps pounded into) those doctors practicing today who have already gone off the arrogance charts - those who are, unfortunately, teaching today's medical students how to behave tomorrow.

But yes, there is a downside, and that is, that such a topic needs an expensive, $42 million institute at all.  If doctors would simply approach their work using a combination of the Golden Rule, and the manners their mothers taught them, and regard their patients with the dignity and respect their patients deserve, then those $42 million could be put to a much loftier use - toward finding a cure toward a debilitating disease, or improving infant mortality, or helping indigent patients get some of the care they need.

Solving my medical mystery - CNN.com

 
"Now, like someone who's made a bad choice in spouses on the first go-round, I am exceedingly careful about whose hands I put myself in. I can't fix a medical system reliant on tests. But I can pick doctors who listen, ones who actually think -- and not just test -- their way to an explanation."
 
 

Thursday, December 29, 2011

Defending the Indefensible

Permission to Repost.

Defending the indefensible?

Margaret Williams 27th December 2011

Professor Simon Wessely once again attempts to defend what has already been shown to be indefensible, namely his own beliefs about the nature of ME/CFS, including his belief that graded exercise therapy (GET) has "an impeccable safety record" (Simon Wessely; Health in mind and body; The Journal of the Foundation for Science and Technology: 2011:20:7: 9 –11).

The article contains so many insupportable assertions that it cannot go unchallenged.

In his article, although he does not mention ME as such, Wessely refers to Chronic Fatigue Syndrome (CFS), but in countless articles published in medical journals, reports from official bodies such as the Joint Royal Colleges, in medical textbooks and in the media, as well as in the PACE Trial literature itself, the Wessely School insist that ME and CFS are synonymous.

In this latest article (the publishing of which is perhaps surprising, given his frequent assertions that he has relinquished his work on ME/CFS and that he no longer feels safe publishing about the disorder because of the death threats he has received, and that he now feels safer in Afghanistan), Wessely conforms to his track record of appearing to form his conclusions before he has generated the data to support his conclusions (he often states his assumptions and beliefs as though they are established fact, for example, he has asserted that people with ME benefit from "adopting the sick role" and from "secondary gain", and that what "precipitates" ME is not what "perpetuates" it, all of which are supposition not supported by data; a further illustration is to be seen in his study of Vitamin B status in just 12 CFS patients in which he found evidence of reduced functional vitamin B status but concluded: "clearly, many patients with CFS are currently taking vitamin B…with little evidence of benefit", yet nowhere does he provide any evidence that "many" patients are taking supplements with little evidence of benefit and his final conclusion again fails to follow from his data: JRSM 1999:92:183-185).

Wessely's assertions in his current article are of particular interest because they provide such clear illustration of his cognitive biases, for example:

"CFS illustrates the gap that lies between physical health/illness on the one hand and mental health/illness on the other": all life-destroying diseases affect both physical and mental health, not just ME/CFS.

"CFS is a multi-factorial illness": Wessely does not know this, since the cause remains unknown.

"To understand why some people do not get better as the months and years go by, one has to look at behavioural and psychological factors": this is nothing more than Wessely's assumption; people do not recover from multiple sclerosis or from motor neurone disease, so it is telling that he makes an exception only in the case of one particular classified neurological disorder (ME/CFS): why do so, unless it is as a face-saving measure because for the last 25 years the Wessely School have rigidly and unscientifically conflated psychiatric fatigue with ME/CFS?

"The illness is then a complicated mixture of predisposition, precipitation, and perpetuation": Wessely states this as though it were proven fact, but it is unproven and his inability to recognise this demonstrates a fundamental misunderstanding of the nature of scientific knowledge.

"A landmark trial on the management of CFS, known as the PACE Trial, was published recently in The Lancet….Two treatments, graded exercise and CBT, clearly made a difference, although they were certainly not 'magic bullets': not only were the interventions used in the PACE Trial very far from being magic bullets, the Chief Principal Investigator himself described them as being "only moderately effective".

"For those who appreciate these things, the trial is a thing of beauty": for those who appreciate these things, the PACE Trial -- which cost £5 million -- has been described as a travesty of science and a tragedy for patients; the conclusions were flawed; the primary outcome measures were dropped; ratings that would qualify a participant as sufficiently impaired to enter the trial were deemed by the Principal Investigators (PIs) to be "within the normal range" when recorded on completion of the trial; there were significant conflicts of interest in that all three PIs work for the insurance industry (whose managers insist that claimants undertake a course of CBT and GET -- called "rehabilitation" -- which, if people are too ill to do so or if they know from their own experience that it makes worse and therefore decline, payments are stopped on the basis that claimants do not to want to get better); the PIs intentionally studied a heterogeneous population and it was conceded only after publication of the results in The Lancet that the Investigators did not purport to be studying ME; there was a failure to control the trial; there was downgrading of what constituted serious adverse events; there were many changes to the entry criteria; data was not reported and objective outcome measures were dropped; methods of scoring were changed so as to produce minimally better results, and the results were blatantly misreported in The Lancet (see
http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm and see also http://www.meactionuk.org.uk/Normal-fatigue.htm ).

"We now have two treatments that we can recommend with confidence to our patients. However, the story does not quite end there. Patient groups rejected the trial out of hand, and the internet was abuzz with abuse and allegations. The main reason for this depressing reaction was the stigma that attaches to disorders perceived (rightly or wrongly) to be psychiatric in origin": the reason people with ME/CFS reject CBT and GET is because they do not work, but Wessely refuses to accept this, so he here provides an explanation already shown by his own research to be incorrect.

He has previously written: "CFS sufferers are also usually portrayed as hostile to psychological explanation, mental illness, and psychiatry in general….This study aims to investigate attitudes of CFS patients to psychiatric illness (and) a comparison group of patients with rheumatoid arthritis (RA) was chosen….We began with the following hypotheses: CFS patients have more negative attitudes to mental illness…(represented by the perceived stigma of psychiatric illness)…(and) failure to identify emotional states (alexithymia) contributes to denial of the role of psychiatric disorders in the aetiology of CFS….Contrary to our hypotheses and the media accounts of CFS, we found no evidence that CFS patients are characterized by particularly hostile attitudes to mental distress….Our study also failed to demonstrate any overall differences in personality traits that may underlie negative attitudes to mental illness or psychiatry….The… alexithymia scores found in the CFS compared with the RA patients were contrary to our original hypothesis….There was no difference between CFS and RA patients in hostility to mental illness….This study provides no evidence to support the anti-psychiatry tone that is so striking in the popular literature on CFS" (Personality and Social Attitudes in Chronic Fatigue Syndrome. Barbara Wood and Simon Wessely; J Psychsom Res 1999:47:4:385-397).

"If one obtained identical results to the PACE trial, but this time with anti-viral drugs, the reaction would have been totally different. This is exactly what did happen when a very small trial of a drug that modulates the immune system (and which has some nasty side effects) was greeted with acclaim from the same sources that tried to discredit the PACE trial, which tested interventions with an impeccable safety record": GET for people with ME does not have an impeccable safety record. Indeed, there is abundant evidence from numerous surveys by ME/CFS charities of almost 5,000 patients that in such patients CBT is ineffective and that GET is unacceptable and sometimes positively harmful.

Those surveys include one sponsored jointly by the ME Association and Action for ME ("Report on a Survey of Members of Local ME Groups". Dr Lesley Cooper, 2000). Cooper found that "Graded exercise was felt to be the treatment that made more people worse than any other" and that it had actually harmed patients
(
http://www.afme.org.uk/res/img/resources/Group%20Survey%20Lesley%20Cooper.pdf).

Another survey of 2,338 ME/CFS sufferers ("Severely Neglected: M.E. in the UK") was carried out in 2001 by Action for ME; its preliminary report stated: "Graded exercise was reported to be the treatment that had made most people worse"; in the final report, this was changed to stating that graded exercise had made 50% of patients worse
(
http://www.afme.org.uk/res/img/resources/Severely%20Neglected.pdf).

The 25% ME Group for the Severely Affected carried out a further survey in 2004 which found that 93% of respondents found GET to be unhelpful, with 82% reporting that their condition was made worse (
http://www.25megroup.org/Group%20Leaflets/Group%20reports/March%202004%20Severe%20ME%20Analysis%20Report.doc).

In 2005, a report ("Our Needs, Our Lives") published by The Young ME Sufferers Trust found that 88% had been made worse by exercise (
http://www.tymestrust.org/pdfs/ourneedsourlives.pdf).

In June 2007, through Section 16b funding from the Scottish Government, Action for ME produced a report "Scotland ME/CFS Scoping Exercise Report", which found that 74.42% were made worse by GET.

In 2008, Action for ME published another survey of over 2,760 patients ("M.E. 2008: What progress?") which found that one third had been made worse by GET and that at their worst, 88% were bed/housebound, being unable to shower, bathe or wash themselves, and that 15% were unable to eat unaided. The Press Release of 12th May was unambiguous: "Survey finds recommended treatment makes one in three people worse" (
http://www.afme.org.uk/news.asp?newsid=355).

In 2009, the Norfolk and Suffolk ME Patient Survey of 225 respondents stated: "Respondents found the least helpful and most harmful interventions were Graded Exercise Therapy and Cognitive Behavioural Therapy" (
http://www.norfolkandsuffolk.me.uk/surveylink.html ).

The International Association of CFS/ME recently published an article by Tom Kindlon (Bulletin of the IACFS/ME: 2011:19(2):59-111: Reporting Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) that details the high rates of adverse reactions to exercise, as well as dissecting the PACE Trial in relation to the heterogeneity of subjects, the tracking of adverse events and the lack of objective outcome measures.

As Ed Lewisohn correctly points out in correspondence relating to the Frenchay Hospital's clinic at Bristol: "You refer to 'Frenchay Hospital's specialist chronic fatigue, or ME clinic', but ME is an incurable neurological condition and cannot be synonymous with chronic fatigue. Chronic fatigue syndrome is treated by psychiatrists with graded exercise therapy, but if exercise makes (it) better, then that condition is not ME….But many patients with ME are also sent to chronic fatigue centres and receive the same treatment: they are then, shockingly, made more ill" (
http://www.thisisbristol.co.uk/chronic-fatigue-syndrome/story-14243686-detail/story.html ).

There is thus an abundance of empirical evidence that GET can result in high rates of adverse effects.

Why is it that the Wessely School, who claim to be so committed to evidence-based medicine (EBM), are permitted to continue to disregard the evidence that proves them to be wrong about the nature of ME and about the efficacy of GET in those suffering from it?

The answer may be because, like so many of the Wessely School myths, EBM does not actually exist.

In 2009 Bruce Charlton, Professor of Theoretical Medicine at the University of Birmingham, clarified the facts in relation to EBM: "It is obvious that EBM was from its very inception a Zombie science….A Zombie science does not perform any scientific function, so it is invulnerable to scientific critique since it is sustained purely by the continuous pumping of funds….The massive success of EBM is that it has rationalised the takeover of UK clinical medicine by politicians and managers….Zombie science is not driven by the scientific search for truth (and it is) kept moving for so long as it serves the purpose of its funders….EBM embraced a top-down and coercive power structure to impose EBM-defined 'best evidence' on clinical practice, whether clinical scientists or doctors agreed that the evidence was best or not….Expertise was arbitrarily redefined (and) virtue redefined as submission to EBM recommendations, so the job of physician was at a stroke transformed into one based upon absolute obedience to the instructions of EBM-utilising managers. Indeed, since too many UK doctors were found to be disobedient to their managers, in the NHS this has led to a progressive long-term strategy of the replacing doctors by more-controllable nurses, who are now the first contact for patients in many primary and specialist health service situations…. EBM was not a real science, indeed, it wasn't any kind of science at all (and) it was not adopted by scientists but by politicians, government officials, managers, and biostatisticians….When the UK government understood that what was being proposed was a perfect rationale for re-moulding medicine into exactly the shape they had always wanted it, the NHS hierarchy were falling over each other in their haste to establish this new orthodoxy in management, medical education and in founding new government institutions such as NICE….Suddenly, the Zombie science of EBM was everywhere in the UK…unhampered by inconveniences such as truthfulness or integrity…it was being practised by many individuals…who lacked…any training and experience in clinical medicine and who certainly did not provide direct patient care….Here was a doctrine which advocated rejecting and replacing with itself the whole model of medical science and practice of the past. It advocated a new model of health service provision, new principles for research funding, a new basis for medical education. And the evidence for this? Well, none. Not one particle. 'Evidence-based' medicine was based on zero evidence (but it) was proclaimed Messiah with the backing of serious amounts of UK state funding…to create a fairly-realsitic Zombie of pseudo-science….Nowadays, EBM means whatever the political and managerial hierarchy of the health service want it to mean for the purpose in hand" (Zombie science of Evidence-Based Medicine. Bruce G Charlton. Journal of Evaluation in Clinical Practice 2009:15:930-934).

EBM, however, has proved invaluable to the Wessely School in the perpetuation of their own myths about and management of ME/CFS, to the advantage of both the state and the insurance industry.

Despite the relentless determination of the Wessely School to claim ME/CFS as a functional somatoform disorder (in his latest article, Wessely reiterates his claim that: "the greater the number of symptoms, the more likely the patient was to develop a mood or anxiety disorder"), medical science is at last ensuring that the Wessely era is coming to an end.

Whilst XMRV is now thought to be a laboratory contaminant (and the triumphant glee of those who rejoiced at this is to be greatly deplored), the role of a retrovirus has not yet been resolved: indeed, Dr Ian Lipkin of Columbia University and chief virus-hunter for the NIH was reported on the Wall Street Journal blog on 27th December 2011 by Amy Dockser Marcus to have said that all the scientists and doctors involved in the NIH study, including the authors of the retracted PNAS and Science papers, "are committed to completing this study because none of us believes that the issue of retroviral infection in CFS/ME is resolved".

Retrovirology apart, there is now undeniable evidence of multi-system damage in ME/CFS, including inflammation of the blood vessels, hypoperfusion of the brain, delayed recovery of muscles after exercise, dysfunction of the immune and neuroendocrine systems, and evidence of marked abnormalities in gene expression profiling.

Professor Nancy Klimas is to head a new Institute for Neuroimmune Medicine (specifically ME/CFS) at Nova Southeastern University: she will be providing cutting edge research and education of health care professionals, combined with care of patients; she will focus on systems biology, connecting neuro-imaging experts with scientists researching inflammation and genomics/proteomics, as well as collaborating with experts in neurotoxicology.

There is also the work of Dr Jose Montoya's Chronic Illness Initiative at Stanford; the husband and wife team of Drs Light at the University of Utah; Dr Derek Enlander's Chronic Fatigue Initiative with a very large budget for research at Mount Sinai, as well as the Public Health and Neuroimmunology Unit (PHANU) at Bond University in Australia (
http://forums.phoenixrising.me/content.php?519), plus the committed work of Professors Mark VanNess and Christopher Snell at the University of the Pacific, all of which disprove the beliefs of the Wessely School that ME/CFS is a behavioural disorder.

Furthermore, the UK Medical Research Council has finally recognised the need for biomedical research into ME/CFS and is funding £1.6 million for research into aspects including autonomic dysfunction, aberrant mitochrondrial and cytokine production in skeletal muscles, and immune system dysfunction.

As clinical psychologist Dr Dorothy Rowe pointed out in 1993: "People who know absolutely that they are right are very dangerous" (The Observer, 14th November 1993), but who paid any attention? Father Cormac Rigby did: "The greatest enemies of truth are those who think they have a monopoly of truth" (The Lord be with you; Family Publications, Oxford, 2004).
Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and sp...

Special Report: Phantom firms bleed millions from Medicare | Reuter

 
This is the REAL Medicare fraud -- not patients allegedly overtreating  Remember -- patients can't get treatment unless a doctor prescribes it, and patients are not the ones who submit the inflated bills, doctors' offices do that, too.
 
So stop blaming Medicare fraud on poor, disabled patients.  Go after the real perpetrators.  That is, if you have the guts to expose the rich doctors who are making large campaign donations to ensure they're not investigated.

Wednesday, December 28, 2011

Judy Mikovits: Sue Vogan’s Blog – Host of In Short Order Radio Show

 

For those of us who still believe in "innocent until proven guilty," a legal defense fund has been set up for Dr. Mikovits:

Mikovits Legal Fund 2031 Jamestown Way, Oxnard, CA 93035 or donate online at

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=ZXBTCE4KMY3US

and for questions or well wishes, please send to: LegalFundJM@aol.com

Monday, December 26, 2011

More on Lo-Alter Retraction

Compliation of articles on the MLV retraction-

Second XMRV-CFS Paper Pulled
http://www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/30372

Another shoe drops as authors retract PNAS chronic fatigue syndrome-virus paper
http://retractionwatch.wordpress.com/2011/12/26/another-shoe-drops-as-authors-retract-pnas-chronic-fatigue-syndrome-virus-paper/

Authors retract paper on detection of murine leukemia virus-releated
sequences in CFS patients
http://www.virology.ws/2011/12/26/authors-retract-paper-on-detection-of-murine-leukemia-virus-releated-sequences-in-cfs-patients/

Scholars Retract Another Study Linking Virus to Fatigue Syndrome
http://www.nytimes.com/2011/12/27/health/research/scholars-retract-another-study-linking-xmrv-to-chronic-fatigue-syndrome.html

Paper Linking MLV Sequences to CFS Retracted

 
Lo-Alter paper retracted:

The Lo-Alter team's findings have come under scrutiny as possibly due to contaminants associated with common laboratory reagents. Phylogenetic analysis conducted by Katzourakis et al. and other groups suggest the sequences identified by Lo et al. in samples from CFS patients collected 15 years apart were not consistent with evolutionary change and were likely due to contamination of the samples with 22RV1, a prostate cancer cell line. The work by Katzourakis is cited in the retraction notice by the authors, although they also state, "there has been no evidence of contamination using sensitive mouse mitochondrial DNA or IAP assays or in testing coded samples…"

Sunday, December 25, 2011

MERRY CHRISTMAS!

Not one bit of decoration in my house this year.  I made the considered decision a couple weeks ago that it was more important to "be normal" for a day and go to The Messiah that a friend was directing, rather than invest the energy in decorations that only I would see.  It was worth a couple days of exhaustion afterward to do something that I used to do and enjoy being out among people who don't know me and therefore don't know that I'm disabled.
 
A friend took me out for Chinese yesterday and we got enough leftovers to get through today without cooking.  It just works out that today is pretty cold (started below freezing), so I'm just as thankful to spend the day curled up in a warm bed than standing in the kitchen (the coldest room in the house for some reason) cooking.
 
The only present I had to open today was a gift from a fibro-friend.  The residents of her senior/disabled complex put together a book of simple and inexpensive recipes -- the ones they cook themselves now that they're old and/or feeble -- which she thought would be useful for me.
 
The only thing that makes my Christmas "normal" is that one of my local radio stations has been doing non-stop Christmas music for three days.
 
To those who think that CFS is an imaginary concept for those who simply don't want to work, think again.  The reality is, our houses are dirty and undecorated because we are too ill to do the work; we spend holidays alone because no one wants to drive over to fetch us or cut their own partying short to drive us home when we run out of energy; there's no Christmas dinner of the sort you expect, because we can't afford either the energy or the money to put on a big holiday production.
 
And to those of you who, like me, are celebrating alone either by choice or by chance, remember that you are never "alone" -- your fellow patients are with you in spirit.  Through online support groups such as ours, CFS_Facts-subscribe@yahoogroups.com, you can share the day with others who are likewise stuck at home and in bed.
 
With wishes for a happy and HEALTHY 2012!
 
 
 
 

Neurobiology underlying fibromyalgia

Pain Res Treat. 2012;2012:585419. Epub 2011 Oct 27.
Neurobiology underlying fibromyalgia symptoms.

Ceko M, Bushnell MC, Gracely RH.
Alan Edwards Centre for Research on Pain, McGill University, 3640
University Street, Room M19, Montreal, QC, H2A 1C1, Canada.

Abstract
Fibromyalgia is characterized by chronic widespread pain, clinical
symptoms that include cognitive and sleep disturbances, and other
abnormalities such as increased sensitivity to painful stimuli,
increased sensitivity to multiple sensory modalities, and altered pain
modulatory mechanisms.

Here we relate experimental findings of fibromyalgia symptoms to
anatomical and functional brain changes. Neuroimaging studies show
augmented sensory processing in pain-related areas, which, together
with gray matter decreases and neurochemical abnormalities in areas
related to pain modulation
, supports the psychophysical evidence of
altered pain perception and inhibition.

Gray matter decreases in areas related to emotional decision making
and working memory suggest that cognitive disturbances could be
related to brain alterations.

Altered levels of neurotransmitters involved in sleep regulation link
disordered sleep to neurochemical abnormalities.

Thus, current evidence supports the view that at least some fibromyalgia symptoms are associated with brain dysfunctions or
alterations, giving the long-held "it is all in your head" view of the disorder a new meaning.

Discussion:

What Do the Psychophysical, Cognitive, and Neuroimaging Studies Tell
Us about the Neurobiology Underlying FM Symptoms?

The wealth of experimental evidence showing that FM patients are
hypersensitive to painful stimuli, as well as unpleasant stimuli from
other sensory modalities, in conjunction with functional brain imaging
data showing increased stimulus-evoked activation throughout
nociceptive pathways, shows that the defining symptom of FM—increased
pain—is in fact real and not just a response bias of the patients
. The
finding that perception is increased in multiple modalities speaks
against the hypothesis that FM pain is due to an upregulation of
peripheral nociceptive processes. Further, psychophysical evidence
that descending modulatory systems are altered in FM patients supports
the opposing idea that FM symptoms are at least in part caused by
alterations in CNS processing of the pain signal, including a
dysregulation of pain modulatory systems. Nevertheless, the apparent
dysregulation within these systems could be caused and/or perpetuated
by a tonic activation related to the presence of ongoing widespread
pain, so that the systems are saturated and cannot regulate further in
response to external stimuli.

Since similar descending control systems, including attentional and
emotional regulatory circuitry, affect multiple sensory modalities
[113–119], a dysfunction (or saturation) in these systems could lead
to the hypersensitivity in multiple sensory modalities. FM patients
show reduced habituation to nonpainful tactile stimuli and increased
cortical response to intense auditory stimuli, both of which have been
linked to deficient inhibition of incoming sensory stimuli [120, 121].
Also in support of the idea of a central dysregulation or saturation
of pain modulation are changes in the opioid and dopamine
neurotransmitter systems, both known to be involved in hedonic
regulation [122].

Finally, the findings that FM patients not only perceive themselves to
have altered memory and concentration ("fibrofog"), but also in fact
perform poorly on multiple cognitive tests
, even when depression is
excluded as a contributing factor, suggest that there are alterations
in brain function. The anatomical brain imaging studies that show
reductions in gray matter in frontal regions important for cognitive
function
further indicate that this common symptom of FM is based on
altered brain function. Together, the experimental evidence provides
strong support for the idea that FM symptoms are related to
dysfunctions in the central nervous system
. The cause of these changes
cannot be deduced from the available evidence, as it is correlational
in nature. Did long-term ongoing pain cause the changes or did the
changes cause the pain? Without a relevant animal model or long-term
longitudinal studies, we cannot answer these questions.

Nevertheless, we can at least say that fibromyalgia is real and that it is associated with multiple changes in the brain.

PMID: 22135739 [PubMed - in process]

The full study can be found here:
http://www.hindawi.com/journals/prt/2012/585419/

Fibromyalgia as Mind-Body Disorder

Note: The mind and body appear to interact in many diseases, however
some assumptions are tricky.

Misinterpretations of bodily symptoms as being depression or anxiety,
especially in diseases (and psychiatric disorders) lacking diagnostic
testing, may confound the results of studies and inflate estimates of
psychiatric co-morbidities. There is also always the danger of mixing
people without a disease in with people with a disease - which also
confounds study results.

As well, many doctors may assume psychiatric comorbidity instead of
asking the patient. Treatments are only efficacious if there is something to treat and assuming a psychiatric co-morbidity where none exist has the potential to create iatrogenic harm.

On the other hand, if a disease process involves the brain it may
create psychiatric problems such as in some seen in Lyme associated
disorders. There is much that remains unknown. Whether a virologist or
a psychiatrist if all you have is a hammer everything looks like a
nail.


Fibromyalgia: Mind-Body Disorder

Question:"I am seeing more and more patients come to my office saying
they have fibromyalgia. How should I conceptualize them? Do they have
a body disease, or a mind disease?"

Rakesh Jain, MD, MPH: The answer to your excellent question is - yes,
you guessed it, both! To consider many disorders as Mind-Body
Disorders is not just "politically correct," it is actually
scientifically highly accurate to do so, and it also helps shape, for
the better, our therapeutic offerings.

Mind-Body Disorders have been the focus of our work for many years,
and the four of us—Drs. Draud, Maletic, Raison, and myself—who
participate in this Community Forum on a rotating basis have been
deeply and positively affected by this changing paradigm. We have
become firmly convinced, based on both our experiences and the huge
amount of literature out there, that this Mind-Body approach is both
accurate and highly therapeutically beneficial to our patients.
Nothing exemplifies this crucial point better than the example of
fibromyalgia.

Fibromyalgia is a disorder that until recently was described as a
disorder with widespread, unexplained pain only, and therefore thought
only to be a "body" disorder. You can easily see why this mistake was
made, right? The thinking was, "The patient's body hurts – well then,
of course it's a body disorder! Why drag the poor innocent brain and
mind into it?"

This mistake was so widespread that the 1990 American College of
Rheumatology criteria for fibromyalgia did indeed entirely focus on
the body and its pain.1 And that's it. It completely ignored several
facts, including the shockingly high rates of depression, anxiety,
insomnia, obesity, and cognitive difficulties that these unfortunate
patients suffered right alongside the pain.2-7The simplistic
explanation was, "They have all these problems, wouldn't you too be
depressed, anxious, etc if you had chronic pain?"

Well, the only problem with this simplistic explanation is that it's
not accurate. Don't you hate it when hard data and cold facts kill all
of our previous theories?! Multiple epidemiological studies show that
poor physical health, anxiety, depression, and insomnia can actually
precede the development of fibromyalgia.8-12 This, along with recent
neurobiological findings (we will discuss these shortly) then forces
you and me to confront a more complex, but ultimately more integrative
view of fibromyalgia – that it is actually a true Mind-Body Disorder.

The evidence to support this new Mind-Body paradigm is so striking
that the American College of Rheumatology's proposed revised criteria
for fibromyalgia actually now incorporates "mind" symptoms such as
depression and unrefreshing sleep into the diagnostic criteria. Such
true progress in a relatively short time is to be celebrated by
clinicians all over!2,13,14 True progress in conceptualizing this
disorder as a Mind-Body Disorder has been made.

At this point, I sincerely hope I have whetted your appetite to
examine some seriously impressive research studies. I will say, and
stand by it too, that the evidence for Mind-Body disruption in
fibromyalgia is so strong that no other explanation for this disorder
will work. For example, we know that even though it is body pain these
patients report, the clearest evidence for malfunction appears to be
at the level of the dorsal column of the spinal cord
.15,16 Here,
evidence points to poor pain modulation being a key disruption,
thereby leading to the excessive pain perception
.17,18 But the story
does not end here. We also have striking evidence pointing to cerebral
cortex disruption (both anatomic and functional) in fibromyalgia
afflicted patients, with high quality evidence from volumetric MRIs
and functional MRIs all suggesting one thing: the pathology is as much
in the brain as it is in the body
.19-21

Let's look at the smoking gun evidence that now implicates and
explains the enormously high psychiatric burden these patients endure.
The brain areas I discussed above (anterior cingulate cortex, medical
prefrontal cortex, to name just a few) are also involved with stress,
mood, anxiety, and sleep regulation. Now you can see why we
conceptualize many disorders, including fibromyalgia, as Mind-Body
Disorders.19

What clinical implications arise from this emerging Mind-Body view?
This question deserves attention from us as well. Let's first examine
the errors that have been made because we initially did not use a
Mind-Body approach with fibromyalgia. By solely focusing on pain
alone, we used to treat this condition solely with analgesics, and
that led to suboptimum outcomes. Now that the field utilizes a
Mind-Body treatment approach, things are improving. We now have 3
FDA-approved medications (pregabalin,22 duloxetine,?23 and
milnacipran24) that have the ability to modulate neurotransmitters in
both the spinal column and the brain.
We also have integrated
non-pharmacological treatment modalities (such as yoga, physical
exercise, cognitive-behavioral therapies) that are all genuinely
Mind-Body in their approach to helping the patient.25-32This progress
has come about truly as a result of the emergence of the Mind-Body
approach to understanding and treating the condition. (By the way,
using this Mind-Body paradigm in explaining disorders to patients and
their families has been a very successful psycho-educational technique
in my practice.)

I suspect this change to the Mind-Body paradigm will become standard
for more and more disorders with the passage of time. I truly believe
that we, the forward-looking clinicians, should rush to embrace this
model as it appears to offer both the best explanation, as well as the
best outcomes for our patients.

—Rakesh Jain, MD, MPH

http://www.cmellc.com/Home/TreatingtheWholePatient/articleType/ArticleView/articleId/4812/Fibromyalgia-MindBody-Disorder/

NSAID dangers

Note: As a patient, regardless of the disorder, if you are taking any
medications and or supplements for long stretches of time your doctor
should be monitoring your blood and organ function on a regular basis.
If your doctor is not doing this and is not willing to do this then it
may be time to find another doctor if you have that option. Or you may
wish to discuss other individualized treatment options.  Everything
has drawbacks/side-effects regardless of whether it is a drug, a
supplement, an artificial device, surgery or even inappropriately
applied exercise or CBT. Evaluating and re-evaluating therapies on an
individualized basis is important no matter what the therapy is.

NSAID Dangers in Fibromyalgia & Chronic Fatigue Syndrome
By Adrienne Dellwo, About.com Guide

Do you take anti-inflammatories on a regular basis? A lot of people
withfibromyalgia and chronic fatigue syndrome do. We don't know of any
special dangers we face from them, but because our conditions are
chronic, many of us take them for decades.

Because we often take medications associated with more high-profile
side effects, such as narcotics and antidepressants, it's easy to
forget that non-steroidal anti-inflammatories (NSAIDs) can be
dangerous. That goes for over-the-counter meds -- Advil, Motrin
(ibuprofen), Aleve (naproxen) -- as well as prescription ones.  Here's
a story shared by a reader here:

"I took [NSAIDs] for 25 years and in 2008, they almost killed me. My
kidneys were failing and my liver enzymes were high and I had fatty
liver. For 3 months I was flat on my back and could only eat a few
bites a day and forced a few swallows of water and was in terrible
pain. .... I finally found out it was the NSAIDs and stopped taking
them and the kidneys and liver healed. Watch for any problems with the
NSAIDs." - Char
Char's story makes me really grateful for my primary doctor, who keeps
a close eye on my kidney and liver function. A couple of years ago, my
liver enzymes were really high, which put me at risk for fatty liver
and cirrhosis. That scared me! In response, I weaned off of the
prescription NSAID I'd been taking for years. When we checked a few
months later, the levels were much closer to normal.

It wasn't easy for me to go without daily NSAIDs. Fibromyalgia isn't
linked to inflammation (except for possibly in the fascia), but my
autoimmune thyroid condition is. My rheumatologist also thinks I have
a rare condition that causes my body to hold on to inflammation. (Some
cases of chronic fatigue syndrome involve inflammation, as do many of
our overlapping conditions.)

As expected, not taking NSAIDs did make me puff up. To counter that, I
increased my Omega-3 and rhodiola supplements and worked to get more
anti-inflammatory foods into my regular diet. My doctor also referred
me to massage to help me through the transition.

I do still take NSAIDs from time to time, but not on a daily basis,
and usually only when I have an injury or when my thyroid condition
flares. We're continuing to watch my levels, and so far, I'm doing
pretty well.

Of course, NSAIDs aren't the only drugs that can be hard on our liver
and kidneys. Narcotics, antidepressants, anti-seizure drugs, Tylenol
(acetaminophen) ... all of them can damage the liver and/or kidneys,
depending on how they are processed. Any of us who are taking
medications long term need to be aware of their impact on our overall
health.