Please donate to Dr David Tuller's Fundraiser so he can continue his advocacy work for us

Countrygirl

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It is time to donate to Dr David Tuller's fundraiser again so he can continue with his excellent advocacy for us.

Please give if you can.




https://crowdfund.berkeley.edu/proj...opPveUHlLK-K-rygp_k1DVucUDLPZCwXer5E8KWB9n1H4

Trial By Error: Reporting on ME, CFS, ME/CFS, "Medically Unexplained Symptoms," and now Long Covid

As in previous years, April is crowdfunding month at the University of California, Berkeley, and I am once again seeking funds to continue my work on ME (including iterations), “medically unexplained symptoms,” and now long Covid. I hope to raise $67,000 in tax-deductible donations to Berkeley to cover the Center for Global Health's costs for my position from July through December of this year. Given increases in costs for the academic year starting July 1st, I have raised the goal from $64,000 in last fall’s campaign. This breaks down to salary ($44,000), benefits ($16,000, mostly for health insurance), and Berkeley's 7.5 % gift fee (around $5,000)
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A Short Recap
Many or most of you reading this will likely be familiar with some of my work, but here's a short recap. I launched the "Trial By Error" series with a 15,000-word investigation of the disastrous PACE trial, published on Virology Blog in October, 2015. By now, I have written hundreds of blog posts about that piece of crap and other aspects of these issues not only in the UK but in the US, the Netherlands, Norway, Finland and many other countries.

Last October, after a years-long struggle, the UK’s National Institute for Health and Care Excellence released its new ME/CFS guidelines. NICE found that the evidence for the psychotherapy and graded exercise approach was all of "very low" or merely "low" quallty--as patients have known all along and as I have relentlessly asserted and documented in my work. The new guidelines aren't perfect but nonetheless represent an enormous improvement and a welcome reversal of the discredited psycho-behavioral approach championed by the so-called “experts” in the field.

But the struggle continues! Publishing guidelines is one thing; implementing them effectively is another. Opponents have mounted fierce protests against the new guidelines continue to promote the same unproven therapies they always have. Now they are applying the same template to long Covid and post-viral illness in general. If successful, this effort will end up undermining the progress that has been in the ME field.

Because of long Covid's range of reported symptoms, many people with the illness have medical issues unrelated to ME and will not receive an ME diagnosis. But a great many will. So examining long Covid in the context of these scientific debates over the source and cause of the devastating symptoms is critical to sustain the momentum of change in the ME domain and affirming the advances in the ME field that have been made to date..........
 

Revel

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It’s already obvious that neurological disease can’t be fixed with exercise. New guidelines are pretty useless, so I’m not sure how advocacy will help.
David Tuller is not advocating for the use of exercise as a treatment for ME/LC, far from it.

He campaigns on our behalf against its use, based upon the fact that it has been proven to be both ineffective and potentially harmful to patients. I think that's plenty worthy of funding his advocacy work.
 
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It’s good that people are trying to convince stupid doctors and psychologists that this disease is real and not psychosomatic.
But, honestly, ME already have objective markers like altered HRV, increased sympathetic activity, poor blood flow to the brain, dysautonomic symptoms like blood pooling and many others. You can’t fake that. I don’t know why doctors don’t believe patients. They studied ANS better than patients, yet patients know more about this disease than anyone else. Wtf is this??? If it is possible to convince doctors that this s**t is real this is good. But patients already suffering so much and where they can gather some money to donate? For advocacy? Maybe it’s more practical to gather some money for better research? I read a lot about this illness and there is only one or two good theories with suggested potential treatment. I don’t even think that some new biomarker will help because there is already many biomarkers. Even brain tissue degeneration.
 

wabi-sabi

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But patients already suffering so much and where they can gather some money to donate? For advocacy?
If it's a financial hardship for you, then you shouldn't feel obligated to donate. I didn't myself this year. But I still greatly admire Tuller's work and look forward to each of his articles and talks.

Yes, it is hard to get entrenched docs to change their minds, even in the face of all the evidence we already have. But that's exactly the value of Tuller's work. He has the energy, knowledge and skill to keep hammering on them. If we devalue this work, we erase hope for change in healthcare. Of course money for research is important too, and if you'd rather put your limited funds there, that's also a good idea. But advocacy and political action and also meaningful. Sometimes the advocacy/political action piece is necessary to force research funding. That's especially true if we are going to get beyond patient funding research to government funded research, where the real money is.

He is our champion and gadfly, and we really need that.