Painting the wrong picture

“ And I think my head is burning, & in a way I’m yearning, to be done with all this measuring of proof…“ Dr Nick Cave sums it up well. For want of a diagnostic test for fibromyalgia, the malaise is investigated by a process of elimination. This takes years, and an average of 3.7 doctors shopped (since the majority consider their training inadequate for the purposes of diagnosis : Perrot & Choy, 2012). Sponsored studies paint the illusion of progress towards a solution. Announcements of conclusions are promoted in the media with ‘Breakthrough’ in the headline, yet FM remains a syndrome of unknown causality. The diagnostic criteria of the 1990 American College of Rheumatologists for specified points of pain was loosened somewhat in 2010, and cynics point to the opportunity thus afforded for a greater market. With no prospects for a cure, palliative medications represent a secure financial investment for pharma with each and every case.

13-Things-Mentally-Strong-People-Dont-DoBuffington and Hackshaw et al described in the august journal (Aug 2013) of the Royal Society of Chemistry a promising analysis for catabolites in blood, explaining “Because accurate FM diagnosis is so crucial for improved patient outcomes, reliable disease markers are urgently needed.” Unfortunately, in excluding fibromyalgia from the Flinders University immunological bloods bank that opportunity for investigations is closed. Prof Roberts-Thomson justifies the selectivity on the grounds of funding. So let’s look at the business case. If Australian prevalence is assumed typical at 3% (let’s ignore the advice by the Mayo clinic that diagnosed patients are only the ¼ tip of an iceberg) there’s 0.6 million sufferers here. Dr Guymer surveyed Monash outpatients to find 41% were on disability due to FM, and if we take the income protection lower limit of $3000/month as a minimum loss in productivity then $20m per day is an extremely conservative estimate of the cost to this nation. That’s a lot of research dollars.

Looking in the wrong places is condemned as unethical waste of resource by Sir Iain Chalmers, knighted for services to medical ethics : “The pharmaceutical industry, for example, does research for its primary need – to fulfill its overriding responsibility to shareholders to make a profit…… Yet only rarely in recent decades has this commercially targeted approach led to important new treatments, even for ‘mass market’ disorders. Rather, within groups of drugs, industry has usually produced many very similar compounds – so-called ‘me-too’ drugs.” His book Testing Treatments is readily accessible, in its entirety.

Quite a clever illusion being created by the healthcare industry, which really doesn’t seem to be up to the challenge.

Not my problem

James Stoxen, head of Team Doctors (chiropractors to the stars) has enjoyed many decades untroubled by fibromyalgia symptoms, thanks to hardcore barefoot running. Reasoning that a musculoskeletal disorder can be beaten in the gym, his lectures on themes around “Walk and Run For Life via Lever Mechanisms or Spring Mechanisms” are in demand. Moving into mainstream, we’ve learnt that conferring of a medical degree doesn’t assure granting of insight into conditions. In the book pictured, Brandon advises ab crunches for fibromyalgics to help in dealing with stress. Hopefully this workout won’t be prescribed by Dr Ruse when he does his intern years. Dr Amand of the Fibromyalgia Treatment Centre can never be accused of insensitivity to the condition – he suffers from it. His book “What your Doctor may NOT tell you about Fibromyalgia” mixes empirical data and patient narrative with theoretical postulations, and their organisation’s commitment to investigate FM can never be challenged. Although their research points to an immunological disorder (Pubmed ID 18535166) the rheumatologists to whom patients are referred are in disagreement. Seems it’s officially not a disease but a functional somatic syndrome, classified under ICD9 in the ‘Unspecified myalgias’ family of diseases under soft tissue disorders.

Amazon copyrightThe treatment? Obvious to everyone (but me) are anti-depressants. Even more mind-numbing are the runarounds a patient endures under the ‘multi-disciplinary approach’. In making FM everyone’s problem it has ended up being no-ones responsibility. This ripens the opportunity for regular announcement of miracle breakthroughs, since instant solutions certainly look better than longterm prospects under the regulated healthcare system.

Naval exercises in training for battle involves scenarios whereby the ability to fight is reduced, so then priority shifts to preservation of the vessel. The CO called this ‘move’, but as it’s my blog I can call it fleeing to refuge *. If immobilized, all focus is redirected onto staying afloat. Fibromyalgia is considered a dysfunction of the ‘fight or flight’ autonomic nervous system, the symptoms testing ones strength and endurance much like my military example.

blowfishA Patient Reported Outcome site drugs.com ranks consumer opinions of generic treatments. The highest rated treatment for fibromyalgia with more than just a few believers is guaifenesin protocol. Promoted by Dr Paul Amand, it’s based on a cough mixture and restricted dietary exposures. The only controlled investigation of effectiveness found no benefit during a yearlong double-blind trial, although they were unconcerned about alleviating any discomfort due to snot and sicca – secondary Sjogren’s. An Eli-Lilly advisory board member Prof Bennett assures us of no medical basis for any of the claims (regardless of its history as a muscle relaxant). Alternative medicine provides hope of refuge, but empirical evidence should be sought before fleeing the healthcare system. Ask on a patient forum …… and then flee.
The first dozen treatments are all off-label and appear ahead of the three US FDA approved medications. These two SNRI anti-depressants and an anti-convulsant have been re-tested for effectiveness in 5 trials each, and the Cochrane Collaboration concluded in review that the two SNRIs “provided a small incremental benefit over placebo in reducing pain”, and no effect on fatigue or sleep. Pregabalin gave “small benefit over placebo in reducing pain, fatigue and sleep problems”, and only 11% more participants reported much improvement. Life-preserving dependence upon pain relievers offers the sufferer little more than help to stay afloat.
A few patient advocates have taken up the fight to resolve FM. This blog adds to their voices.

* The RAN mission is to ‘Fight and win at sea’. Glad their intent isn’t to get a draw, or do it up the rivers. Contrast the Indian Navy: ‘Hit first, hit hard, and keep hitting’.  When the Oz and US Navy’s still had their heads down on Somali piracy doing Hazard Risk and Cost Benefit Analyses, the Indian ships went in pursuit. Successfully, without the need to make movies about it.