Thursday, December 18, 2008

'Honey, you're really sick' - CNN.com

How to tell your child the bad news.
Despite the notions of "Yuppie Flu" or that it's somehow related to menopause, about 1/3 of CFS patients are children. How do you explain an illness to a child when the doctor doesn't understand it himself?
The good news is that children are more likely than adult patients to recover, so go ahead and tell your child that "you'll feel bad for a while, but eventually you'll feel better".
See also www.DavidSBell.com -- Dr. Bell is one of the experts on pediatric CFS.

CFS and Somatoform Disorders

"May we also stress that, as pulsetoday is a site for GPs and other health professionals, it is people from these groups whose views we seek."

[The original article is at: http://www.pulsetoday.co.uk/story.asp?storycode=4121412 . I sent in a factual response which was very dry but as it was purely factual, I felt it would be very difficult for them not to put it up, which they did. Tom]

http://www.pulsetoday.co.uk/story.asp?sectioncode=20&storycode=4121546&c=2

Chronic fatigue syndrome and somatoform disorders, contrary views 18 Dec 08

Dr Christopher Bass's recent article on somatoform disorders, and in particular his inclusion of chronic fatigue syndrome and fibromyalgia within this grouping, has provoked a strong response from sufferers of the condition.

There is a highly vocal ME/CFS lobby which strongly opposes the categorisation of the condition as a psychiatric/mental disorder, arguing strongly that it is primarily caused by physical components.

Rather than add their extensive comments as feedback to Dr Bass's article, which rather than stimulating debate we felt would somewhat drown it out, we reproduce them here for you to consider. What's your view? Has there been too little focus on the physical aspects of CFS and Fibromyalgia?

Or are those with these conditions being overly sensitive to a diagnosis that it's a psychiatric disorder, with the historic stigma this brings that 'it's all in the mind' and that the sufferer is 'weak'.

May we also stress that, as pulsetoday is a site for GPs and other health professionals, it is people from these groups whose views we seek.

________________________________________________________________

Antidepressant drugs maybe helping CFS patients but will not help ME/Lyme disease sufferers. And for CBT, GET, PACE etc for ME/Lyme it is just a waste of time. How can drugs be prescribed when doctors dont know what is making us ill. We have biomedical research to show just what is going on but doctors and government will not accept it! Is this because it may show that contaminated polio vaccines and germ warfare may be involved?
Jacqui Butterworth
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Misdiagnosis wears a new name, a diagnosis of imagined illness in the patient saves the doctor's day! Unfortunately iatrogenic harm will be on the increase if doctors are diverted from properly investigating patients because of the increase in reporting of so-called somatoform disorders by psychiatrists with unsubstantiated 'illness beliefs' about serious medical conditions.

Chronic fatigue syndrome is one of two things: the renaming of multi-systemic disease Myalgic Encephalomyelitis, a serious infectious disease of the CNS classified by the WHO as a neurological disease since 1969; or as a result of the unfortunate renaming and loose criteria a mixed group of undiagnosed patients who do need proper investigation of the underlying cause of their illness. There are guidelines for diagnosing and treating ME/CFS including diagnostic tests for neurological, immune, cardiac abnormalities and viral etiology if doctors care to look for them, there are over 4,000 published studies of the serious abnormalities found in this disease, autopsies proving that there is inflammation of the brain and spinal cord and historical records of outbreaks dating back to the 1930s, and other serious diseases including cancer have been uncovered in patients who were dismissed under the unfortunate CFS label. The proposed 'psychological' causes for CFS as outlined in this article have been disproven and the sensitivity to drugs is a sign of the disease, the body's loss of homeostasis and ability to detoxify properly.

Fibromyalgia is a similar disease recognised by the WHO which often overlaps with other diseases that don't have a single biomarker like M.E. or Lupus, and recent research suggests that it is a disease of the CNS with evidence of viral etiology. Bass is simply wrong in stating that Fibromyalgia has been renamed as "chronic widespread pain", that was a rather simplistic view of this disease before much was known about it.

The promotion of these unproven beliefs has no place in medical and scientific discourse, they cause untold harm to patients and loss of respect for the medical profession. Misdiagnosis is a much more serious concern and the medical profession is losing credibility as the everyday stories of misdiagnosis become widespread in the general population.

John Anderson ________________________________________________________________

Dr Bass is sadly misled in believing that patients with Chronic Fatigue Syndrome (now officially named CFS/ME, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) are 'reasonably comfortable' with the use of the term 'functional' or indeed 'somatoform' to describe their illness. The reality is quite the opposite. He chooses to ignore the thousands of papers evidencing biological abnormalities (rendering questionable the use of the term 'medically unexplained' with reference to this condition) as well as the pressing need for appropriate testing and further biomedical research into ME/CFS.

This is the most disturbingly misleading article refering to CFS that I have read for some considerable time. GPs following Dr Bass's guidance would be doing both themselves and their patients with CFS/ME a gross disservice.

Jacqui Footman, Information and Publicity Officer, South Molton ME Support Group, http://www.mecfssupportdevon.org.uk/ ________________________________________________________________

It might be useful to attend a few biomedical research conferences about CFS. They are full of objective science and demonstrate that ME/cfs has been shown to be linked to enteroviruses in many cases.

Also, it is a fact that due to lack of investigation, there is a large number of patients who have been misdiagnosed with CFS/ME. They have been found to have: celiac disease, MS, hypothyroidism, IBS, Lupus, cancer and many other extremely physical illnessess.

Johnathan Kerr has identified seven genomic subtypes of CFS/ME.

Remember that in the history of medicine, the following conditions were perceived as psychiatric: epilepsy, brain tumours, parkinson's disease, colitis, M.S.

Things may be medically unexplained at the moment, but that doesn't mean that they will remain so.

Jill cooper

* * *
I initially reported that all my symptoms started after a virus. The doctor laughed it off, impossible that a virus months earlier was still causing symptoms. I guess he's never heard of polio, which leaves lifelong after-effects, or chicken pox, which can cause shingles decades later. It was preferable to him to label me a head case, and to blame the problems on a desire to be a housewife, than to investigate why I had objective symptoms such as fever, vomiting, diarrhea and fainting.

The problems in CFS may be "out of the ordinary", but they are not unique. The open-minded can readily come up with other, more accepted conditions which cause similar problems. In fact, there is substantial overlap between the symptoms of CFS and those of MS or post-polio.

The problem is that doctors see what they want to see; if they want to see a lazy/crazy woman, they will look no further. If the patient persists in insisting that the problem is physical, that's simply more evidence that she's crazy.

Even among patients who were hospital doctors and nurses, who were tucked into beds in their own hospitals, and had the initial flu-like illness documented in medical records, there are accusations that their problems are psychosomatic rather than caused by the documented viral illness!

I'm one of the iatrogenic harm cases -- doctors refused to address the physical problems, focusing only on treating depression which no psychiatrist could find, until I was told that I had deteriorated too far to ever work full-time again. When psych reports came back that I was decidedly not depressed, the doctors disregarded them, because they could not accept any proof that they were wrong -- not my insistence that I had objective physical symptoms, not the psychiatrist's insistence that there was nothing wrong inside my head. Their minds were already made up, and they were only going to accept evidence that proved they were right.

And thus it is with the pulsetoday article -- anyone who dares to disagree with the pre-ordained conclusion must be dismissed as a crackpot. 5000+ international research studies showing biomedical causes for the symptoms must be ignored. Only those few flat-earthers who agree with the author's wrong conclusion are consulted and quoted.

Millions of patients worldwide describing a viral onset cannot be wrong, and, in fact, the evidence has proven us right. Yet, there are still those who cling to their outdated and disproven ideas, which may condemn their patients to a lifetime of hell. Whatever happened to "first, do no harm"?

Wednesday, December 17, 2008

How do we STOP doctors from assuming the worst?

Doctors like to think they’re infallible gods, and they have some people bamboozled into believing that they are. However, there are regular reports in the media of death and disability caused by inadequate or inappropriate medical care, including people who are ignored as they lay dying in the Emergency Room. And most CFS patients have run into doctors who didn’t know and didn’t care, finding it easier to jump to a wrong conclusion than to painstakingly track down the right diagnosis, with the result that the patient gets worse because the treatment is inappropriate.

In discussing the case of a patient who died unnoticed in a hospital waiting room, while notes in the medical records claim she was checked on regularly, CNN Senior Legal Analyst Jeffrey Toobin says:
If people at the hospital put false information in medical records, prosecutors could use that as evidence of just how willful, reckless and irresponsible their behavior was, perhaps amounting to manslaughter.
July 8, 2008, "The Situation Room"
http://transcripts.cnn.com/TRANSCRIPTS/0807/08/sitroom.03.html

Doctors who falsify medical records in order to justify an incorrect diagnosis should be prosecuted. In most states, it’s illegal to place "false or misleading information" in medical records because it can cause patients problems in the future – among others, they might be treated for a condition they never had, and suffer adverse effects from that treatment, or may be denied a job because there’s an inaccurate and unwarranted diagnosis in their file. A psych diagnosis might preclude you from getting a gun permit, and certain medical diagnoses might prevent you getting a even a minimum wage job at McDonald’s because you couldn’t get a food handler’s certification with that disease (that you don’t actually have).

Yet, even with proof that doctors put false and misleading statements in my medical records, it was impossible for me to get anyone interested in taking any action against the doctors, because I didn’t die. I’m permanently disabled as a result of not getting the correct treatment before there was physical damage, but I didn’t die. Still, my injury was not severe enough for any government agency to take any action on my behalf (technically, since it caused permanent damage it does qualify under the "great bodily injury" statute, but it is not an injury that left a visible scar, so it was hard to convince anyone of that), and as soon as lawyers heard that my condition is CFS, they shied away because of the stigma of the disease: it would be an uphill battle in proving to a jury who thinks CFS is just crazy/lazy that the doctor was wrong in stating that I had a long history of depression and simply didn’t want to work.

Pretty much the only help anyone was willing to offer me was the advice that under HIPAA, you can request that the incorrect information be removed from your file. However, the catch is, the medical group that put it there is the one who decides if it’s inaccurate. The doctor who put the most false statements in my records swears up and down that this is what I told him, and therefore, he’s not going to change it because he doesn’t think it’s inaccurate. It’s his word against mine what I told him, since I didn’t tape record the appointment.

Fortunately, I had the expertise to file a lawsuit on my own, so it’s a matter of public record that these doctors falsified medical records and made false statements about me by phone and in writing to the people investigating my Disability application.

Although I didn’t get any money out of my case, I did get the chance to inconvenience the doctors for a few hours to take their depositions and pepper them with questions "have you read this book?", "have you read this research article?", things where the titles make clear that CFS is post-viral, there are testable physical abnormalities, anti-depressants are useless, aerobic exercise is dangerous... If nothing else, next time they get a CFS patient, they may remember hearing that anti-depressants and exercise are the wrong thing to prescribe.

If the doctor had any question about the accuracy of my reporting (as he later claimed), he could have checked me into a hospital overnight for observation. Two small problems with that: (1) if you’ve been hospitalized, receiving State Disability is supposed to be automatic, and this guy’s goal was apparently to prevent me from ever getting any sort of Disability benefits, (2) if the nurse’s notes confirmed what I was saying about daily digestive problems 12+ hours after last eating (not caused by spicy/greasy foods as he claimed) and "severe insomnia" (terminology of the doctor who actually reviewed my sleep diary instead of assuming that "in bed" and "asleep" are the same thing), he could no longer deny that there was a serious physical problem; if all he had to go on was my symptom reporting, he could continue to claim I was exaggerating and "there is no objective evidence" – there’s no objective evidence because he did nothing to develop objective evidence. The tests that should be normal were done (and used to "prove" there was nothing wrong when the results were, as they should be, normal), and the tests that should be abnormal were never ordered, so I couldn’t use those as objective evidence that the problem was not depression.

Unfortunately, my knowing what tests should be ordered and what medication should be prescribed doesn’t help me get well when the doctor flatly refuses to listen to what the experts say should be done and, in fact, does what the experts say is pointless, and then blames me when useless medication to treat a condition I don’t even have doesn’t help in the least. If I had a prescription pad, I would have been back to work in a couple months, because I would’ve been taking the expert-recommended pills as soon as I realized that I was in relapse. But, instead of acknowledging that I was telling him exactly what needed to be done to get me back to work, he accused me of not wanting to get well and return to work because the wrong treatment didn’t help: it was easier to make false statements about me than to admit that he was wrong.

If more patients who find false statements in their medical records would do the same thing, it would help our cause – if you’re unemployed or collecting SSDI, you probably qualify to file "in forma pauperis", i.e., without paying a fee. Even if you do nothing more than file the check-box Form Complaint available at the courthouse (the California form has a spot for you to handwrite or type a brief statement like "doctor falsified medical records"), it’s logged in for future reference that Dr. John Doe was sued for falsifying medical records. Then a real malpractice lawyer handling a case for someone with a more respected medical condition can use your experience to support the statement that this doctor "has a pattern and practice" of falsifying medical records, and perhaps hurry a settlement for his client. Sometimes, you have to do things for the greater good and not because you personally are going to get anything out of it.

"Lost Voices"

Invest in ME - Lost Voices
Invest in ME are offering a new book - "Lost Voices - The stories of families living with myalgic encephalomyelitis" - which we hope will help healthcare professionals, media, ME Support groups and people with ME in their quest to improve education and assist with publicising of the illness myalgic encephalomyelitis (ME).
The name 'Lost Voices' refers both to the fact that people who are severely ill with ME are generally not in a position to make themselves heard, and also to the way that the prejudiced denial of ME - as an 'aberrant belief' rather than a devastating physical illness - has meant that often others are incapable of actually hearing and seeing what is being said and shown - our voices drop into a void.
The book is an A4 landscape size with a laminated card cover with pictures, mostly in colour. 'Lost Voices' is primarily written by people affected by severe ME- whether as sufferers, carers or families.
The book provides the following -
- It provides an opportunity for people who are usually invisible and unheard to speak for themselves, so that their situation can be seen and understood more clearly.
- It clearly and movingly shows the evidence of the devastating impact this physical disease has on individuals and their carers and families.
- It will bring to more public notice the plight of ME sufferers.
- It will help change a widespread lack of comprehension based on general misinformation, vague definitions, guessed numbers and statistics, to the development of empathy and concern for those who are so ill.
- It can educate the medical profession, the public and others such as wider family.
- It will, hopefully, encourage a sense of community among ME sufferers and those supporting them.The stories and photographs are provided by carers, families and, as far as possible, people with ME themselves. 'Lost Voices' represents different families, showing the impact of the illness on all family members and sufferers and carers.
To order this booklet contact Invest in ME at info@investinme.org or use the web ordering page at http://www.investinme.org/LostVoicesBook/Order.htm . Price £8.00 for UK delivery (£9 for delivery to Europe and £13 for delivery outside Europe). Prices include p&p.
---------
"Lost Voices" - a view from Oliver, whose older sister has severe ME -"Lost Voices is not just a book about ME/CFS, rather it is a book that has been created and written by the very people who experience the illness first hand; severe sufferers, their carers and their families. The combination of photographs, images and writing found in Lost Voices beautifully express the realities of the illness and its impact not only on the sufferers but on their friends and families as well, giving a voice to so many people who have been left to fight this debilitating illness in isolation. It does not just tell one person's story or even one family's story. Lost Voices brings together and shares the stories of many different individuals, families, carers and friends; each story unique, each story providing an insight into a world that has been invisible to most people for too long. Anyone who has suffered from or is still fighting ME/CFS will find Lost Voices a powerful and uplifting reminder that they are not alone, that there are so many others like them, fighting for recognition, fighting for understanding and fighting for fair and effective treatment. This is a book full of love, courage, hope and determination.
This book is not just for those suffering from ME/CFS but is also for their carers, friends and family members. You can share the experiences of others who have been sucked into this hidden and isolated world. Lost Voices also provides an invaluable way of explaining this illness and its impact to those who are fortunate enough not to have experienced it first hand.
Lost Voices contains contributions offering insight and expertise from leading figures in the ME/CFS research and support community; Vance Spence, Dr John Chia, Jane Colby and Annette Whittemore - Founder of the Whittemore Peterson Institute for Neuro-Immune disease, which is already producing ground-breaking biomedical research.
The forward has been written by Leonard Jason - Vice President of IACFS/ME':
Lost Voices will help healthcare professionals and others become less judgmental, and more tolerant and understanding of those with ME, for these are the voices of heroes... there were moments of wonder when I realized that these patients have something uniquely profound to share with a world so saturated with materialism... these patients are asking us to wake up from our stupor... Their courage and life affirming stories challenge us to act. Just as the Civil Rights and Women’s movements focused our attention on serious inequalities and the need for activism, so does Lost Voices force us to recognize the needs of children and adults with ME and to join the fight for a cure.'
The introduction to Lost Voices is an invaluable asset for anybody who has ever tried to answer the question 'What is ME/CFS?' It examines some key areas of confusion which have resulted in misconceptions and ignorance about the nature and severity of the illness amongst the general public, the government and the medical profession. Cutting through this misunderstanding, the introduction to Lost Voices argues powerfully for a new biomedical focus on subgroups to drive future ME/CFS research and treatment.
Lost Voices is a book to help others understand the hidden reality of life with severe ME; a book that allows one to feel the comfort of shared experience whether it be suffering, courage, love, hope or determination; a book with key information about ME; a book to be moved by; a book to enjoy.
Please buy Lost Voices and use it to help fight the ignorance and injustice that results in so many ME sufferers struggling invisibly and unheard. The purpose of this book is to educate in the broadest possible sense and it is not being sold for profit by Invest in ME."
Invest in ME Charity Nr. 1114035 www.investinme.org
* * *
When I write about personal experiences with CFS, I'm often accused of exaggerating. But hearing the same story from others who have the same experiences sometimes tips the balance to being believed, or at least more believable.
You may find that your friends/relatives/doctor are more willing to believe you if they see the same statements from other patients in this book.

Tuesday, December 16, 2008

CFS and Personality Disorders

Source: Journal of Psychosomatic Research
Vol. 66, #1, pp 13-20
Date: January 2009
URL: http://www.sciencedirect.com/science/journal/00223999

Chronic fatigue syndrome and DSM-IV personality disorders

Joachime Courjaret(a,*), Christiaan K.W. Schotte(b,d,e), Herlindis Wijnants(c),Greta Moorkens(c), Paul Cosyns(a,d)
Department of Psychiatry, University Hospital Antwerp, Edegem, Belgium Faculty of Psychology and Educational Sciences, Free University of Brussels (VUB), Brussels, Belgium Department of Internal Medicine, University Hospital Antwerp, Edegem, Belgium Collaborative Antwerp Psychiatric Research Institute (CAPRI), University of Antwerp, Antwerp, Belgium Department of Clinical Psychology, University Hospital Brussels (UZ Brussel)*
Corresponding author. University Hospital Antwerp, Department of Psychiatry, Wilrijkstraat 10, B-2650 Edegem, Belgium. Tel.: +32 3 821 3767; fax: +32 3 825 16 41. E-mail address: kim.courjaret@uza.be (J. Courjaret).

Abstract

Objective
Personality is an important factor in the research of the chronic fatigue syndrome (CFS). Although some studies report a high rate of personality disorders - around the 40% level - in samples of patients with CFS, the generalizability of these findings can be questioned. The present study evaluates the prevalence of Diagnostic and Statistical Manual for Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) personality disorders in a sample of female CFS patients and in two control groups.

Method
The ADP-IV questionnaire (Assessment of DSM Personality Disorders IV) was used to assess the DSM-IV-TR personality disorders at a dimensional and categorical level in a sample of 50 female CFS patients and in two matched control samples of Flemish civilians (n=50) and psychiatric patients (n=50).

Results
The results indicate a striking lack of statistical significant differences between the CFS sample and the Flemish control group at the level of dimensional Trait scores, number of criteria, and prevalence rates of personality disorder diagnoses. Unsurprisingly, higher scores at these levels were obtained within the psychiatric sample. The prevalence of an Axis II disorder was 12% in the Flemish and CFS samples, whereas the psychiatric sample obtained a prevalence of 54%.

Conclusion
The prominent absence of any significant difference in personality disorder characteristics between the female Flemish general population and the CFS samples seems to suggest only a minor etiological role for personality pathology, as defined by the DSM-IV Axis II, within CFS.

* * *
Doctors seem to feel the need to label any health problem affecting primarily women as being psychiatric in origin. As Dr. Bell has observed, putting "depression" or "anxiety" in the medical record absolves the doctor of the need to do further testing to determine the real cause of the symptoms. (However, Dr. Bell also cites a statistic that fully half of all patients originally given a psych diagnosis are eventually found to have something physically wrong that explains their symptoms.)

Time and again, research has proven that True CFS patients (not those who have fatigue from a psychiatric problem without the immune/neurological abnormalities seen in True CFS) have mental health issues at precisely the same percentage as the general population.

Yet, here we are, 25 years later, still wasting money on research to prove that we're not just lazy or crazy, rather than spending that money on finding a test or a treatment or a cure for the biological problems in CFS.

Sunday, December 14, 2008

Fight for our Civil Rights

From www.aapd.org (American Association of Persons with Disabilities

ADA Amendments Act

Tell EEOC Not to Rush Through 11th Hour ADA Amendments Act Regulations

AAPD staff have learned that the U.S. Equal Employment OpportunityCommission has scheduled a Commission meeting for this Thursday, December 11at 2 p.m. to discuss regulations interpreting the new ADA Amendments Act thatwas signed into law by President Bush on September 25. We have learned thatone of the potential items for discussion is a new "Interim Final Rule"interpreting the new ADA Amendments Act that would take effect concurrent withthe statute's effective date on January 1, 2009.

If the Commission decides toissue an Interim Final Rule, that means that their regulations would take effect BEFORE anyone outside the commission has had an opportunity to review and comment on them. This is not acceptable.

Typically, administrative agencies issue a notice of proposed rulemakingand give stakeholders an opportunity to comment on proposed regulations beforethey take effect. We believe that it is essential that the disabilitycommunity and broader civil rights coalition that worked hard to get the ADAAmendments Act signed into law have an opportunity to see and comment on thenew regulations before they take effect, and we are concerned that theCommission would try to rush through a final rule with no public comment atthe end of an administration.

Call today to let the EEOC Chairperson, Naomi Churchill Earp, and theLegal Counsel, Reed Russell, know that we want an opportunity to review theproposed regulations BEFORE they take effect. The ADA Amendments Act was theproduct of long negotiations and discussions with multiple stakeholders, andit is important that the regulations benefit from the same kind of broad-basedinput. The new law repudiates an overly narrow approach to the definition ofdisability that had been applied by the U.S. Supreme Court AND the EEOC, andwe don't want to see the new regulations inadvertently create new problems forcharging parties with disabilities and employers.

Congress did not instruct EEOC to issue regulations before the new law'seffective date, and there is no reason for the regulatory process to moveforward without the typical notice and opportunity to comment. Our messageto EEOC is simple: Don't issue a rule before we have an opportunity to beheard. Nothing about us without us.

To Reach the Chair's office, call 202 663-4002.

To Reach the Legal Counsel, call 202 663-4609.