If we were faking, would we demand research?

"The only people – the mentally ill and the physically ill/disabled – who'd have something to fear if they were 'faking it' are the very ones clamoring for more research and asking for cures to be found, and are asking their doctors 'isn't there something more/new we can try – I'm ready to be a guinea pig for you', etc. You'd think the doctors (psych and physical ones) would get a clue!"
Jana, medically-retired RN

Jana hits the nail on the head. The doctors who've accused me of "not wanting to work" chose to forget that I came in asking them to fix me up so that I could work. I'm not sure how "my job is in jeopardy, you have to do something so I don't get fired" can possibly translate into "I don't want to work", but that's the way one doctor understood it. Another doctor, years after I'd been diagnosed, I walked in and told him what medication was expert-recommended, and he refused to prescribe it, because he wanted to treat me for something else entirely, something that I never had. He totally discarded a specialist diagnosis and expert recommendations in order to substitute his own wrong diagnosis. When the stuff known to be useless against what I have actually proved to be totally useless (it made me violently ill), he accused me of "not wanting to get better and have to go back to work". Selective memory, he completely forgot that I had told him right off what the right medication was, because I did want to get better and go back to work. If I don't work, my bills don't get paid. He never did prescribe the right stuff. When I asked him for a test that should have been abnormal, he refused to order that, either. I was the one who wanted the tests that would prove whether I was faking or not. It was the doctors who didn't want to order them. It became apparent that they did not want to see the proof that CFS is a real disease with physical consequences, not just depression or laziness. Dr. Starlanyl speaks of patients having to educate their doctors; she doesn't address just how many of those doctors are so sure they are right that they flatly refuse to be educated, they don't want to see anything that will challenge their assumptions about CFS. There are thousands of research studies showing testable biological abnormalities, yet some doctors continue to insist we're just lazy or depressed, and get very annoyed when an educated patient like me tries to correct them with up-to-date information about the nature of this post-viral neurological illness which has far more symptoms in common with MS than it does with depression. When I finally did get one of those tests, the results were described to me as "off the charts", so "sky high" that the doctor was convinced it had to be lab error until a second blood draw, sent to a second lab, produced even higher numbers. Those numbers got me kicked out of that clinical trial, for being too sick, but provided my vindication for all the accusations that I'm faking because I don't want to work. It should be noted that I've never stopped trying to work. Anyone who says I don't want to work is ignoring the facts. When I first lost my job in 2000, I applied for Unemployment benefits and, as required, applied for jobs every week. I got interviews on a regular basis, but either couldn't get to the interview because I was stuck in the bathroom when the time came to leave, or got to the interview and had to explain why I was having these visible symptoms (the same objective symptoms that the doctors claimed they couldn't see – couldn't, or didn't want to?) and why I thought these severe symptoms would not impede my ability to do the job. The day that Unemployment expired, the first day it was legal for me to do so, I started my own business. A couple months later, I accepted a friend's offer to partner up in her business, and invested money in it. That's hardly evidence that I "don't want to work"; quite the opposite. It proves that if no one else will hire me, I'm going to hire myself, because I want to work. I need to work – there's no husband/sibling/children to pay my bills if I don't – so I work even in the face of the biggest obstacles. (And SSDI doesn't pay enough to pay the bills.) However, when it comes to CFS, people see and hear what they want to hear. If they want to see someone who doesn't want to work, you can drag yourself from bed to desk and spend all your non-working hours resting, and the only thing that they will acknowledge is that you spend an awful lot of time being a couch potato; not one word about the efforts you're going to in order to keep working.

See also _http://cfs-facts.blogspot.com/2008/02/top-10-tests-that-should-be-done.html_ (http://cfs-facts.blogspot.com/2008/02/top-10-tests-that-should-be-done.html) for the tests that should be abnormal in people who have CFS – the tests that will differentiate the real patients from those who are simply depressed or, dare I say it, faking.

Article courtesy of http://www.co-cure.org/

Recommended Treatment of ME/CFS Often Detrimental

*PRESS RELEASE*

Hilversum/Groningen/Zwolle, The Netherlands17 December 2008

Guido den Broeder

*Recommended treatment of ME/CFS often detrimental*

Frequently advised treatments for patients with chronic fatiguesyndrome(ME/CFS) in The Netherlands appear to lead to deterioration of their condition as often, or even more often, as to improvement. This applies to cognitive behavioral therapy (CBT) and exercise therapy. Other treatments have far more positive results. These are the findings of a study by NIVEL(Netherlands Institute for Health Research) among the ranks of the ME/CFS patient organizations. * Most patients are dissatisfied with the way doctors diagnose CFS. They find their doctors have insufficient specific knowledge and feel they are not taken seriously enough. The three Dutch ME/CFS patient organizations hold the view that the care for ME/CFS patients must be improved considerably. They emphasize that the development of the multidisciplinary guideline should continue without further delay.

Medical guideline
Since the beginning of 2007, CBO and the Trimbos Institute are working on a medical guideline for the diagnosis, treatment, examination and managementof ME/CFS. The patient organizations are looking forward to the completion of this guideline and believe that its drafting should thoroughly take into account the findings of the NIVEL study. According to these organizations, the guideline should not serve to one-sidedly promote CBT and physicaltraining; furthermore, the guideline should not be based upon one specific clinical picture. In addition to CBT and exercise therapy, anti-depressants often appear to make patients' symptoms worse. According to the survey, better outcomes are achieved with diets, guidance to find a balance between activity and rest, guided bedrest, and painkillers. The patient organizations plead for doctors to actively help patients to find the best possible treatment.

Serious consequences
The study further reveals that the consequences of ME/CFS can be very serious. Many patients are restricted regarding to work, school and household activities, raising children, social contacts and recreation. They indicate that they need more support - in such areas as income, work, school and daily life - than they actually receive. Almost half of all patients disagree with the outcome of medical examinations, related to various social benefits, applications for transportation provisions and home adjustments. A large percentage finds that factors as prolonged recovery time, varying physical tolerance, concentration and memory problems, pain and dizziness, have not sufficiently been recognized.

*A.J.E. de Veer and A.L. Francke, Zorg voor ME/CVS-patiënten. Ervaringen vande achterban van patiëntenorganisaties met de gezondheidszorg. (Care forME/CFS patients. Experiences of the supporters of patient organizations withhealth care.) NIVEL, Utrecht 2008. The research report(in Dutch) can be downloaded at *http://www.nivel.nl/pdf/Rapport-**draagvlakmeting-CVS-ME-2008.pdf*

The three ME/CFS patient organizations in The Netherlands:

ME/CVS Stichting NederlandNoordse Bosje 161211 BG Hilversumme-cvs-stichting@zonnet.nlwww.me-cvs-stichting.nl

Steungroep ME en ArbeidsongeschiktheidBankastraat 42C9715 CD Groningeninfo@steungroep.nlwww.steungroep.nl

ME/CVS VerenigingKortenhorststraat 238015 BW Zwollebestuur@me-cvsvereniging.nlwww.me-cvsvereniging.nl

END OF PRESS RELEASE