Friday, September 19, 2014

Why we need more lawsuits ...

It is often said - in a somewhat disapproving tone - that we are a litigious society. 

Usually, this statement comes after a report about a "frivolous lawsuit" - a woman suing McDonalds because her coffee was hot, a man suing Anheiser-Busch because drinking beer didn't make him more attractive to women, a physical therapist suing his local nudie bar, claiming whiplash from a lap dancer. And so on.

These lawsuits are good for a laugh, but the truth is that lawsuits are what enable us to enforce laws. Without them, laws would remain "on the books," unenforced and unenforceable until a judgment upholds them.

Jeannette Burmeister's recent success in securing the support of the justice system to obtain HHS documents regarding the IOM study of diagnostic criteria for ME/CFS underscores the importance of lawsuits. Craig Maupin spent a year attempting to obtain documents regarding ME/CFS through legitimate channels without success. It took a lawsuit to enforce FOIA laws.

Britain, unfortunately, is not as litigious as we are. In 2013, Mr. Courtney attempted to gain access to the complete results of the PACE trial through FOIA. He was refused on the basis of "intellectual property rights," a position upheld by the courts. In like fashion, Mr. Matthees has spent months trying to obtain the full results of the PACE trial, only to be refused time and again. (See below for the most recent refusal.)

There is a very good reason to make the full results of the PACE trial available to the public: It is a matter of human rights. All patients have the right to obtain information about potentially harmful treatments. When medical studies performed on behalf of pharmaceutical companies withhold information about harmful side effects, patients have the right to sue. Successful lawsuits have been launched against tobacco companies based on the same principle.

There can be no doubt that the secrecy surrounding the PACE trials is not only to mask the fact that the trials were not as successful as their proponents claim, or that they were rigged, but that patients may have been harmed by the treatments that are now universally accepted in Great Britain (and increasingly in the US) as the best way to treat ME/CFS. ME/CFS patients have a right to know how many patients deteriorated after a year of graded exercise therapy and cognitive behavioral therapy.

What the citizens of Great Britain need is more lawsuits. Unfortunately, the British interpretation of common law is that nothing need ever change.

What we can do

AllTrials, a campaign spearheaded by Dr. Ben Goldacre, is calling for "all past and present clinical trials to be registered and their full methods and summary results reported." Their petition, which has garnered 80,000 signatures, states:
"All trials past and present should be registered, and the full methods and the results reported. We call on governments, regulators and research bodies to implement measures to achieve this."
The AllTrials campaign has - somewhat ironically - gained support in the UK. The Chair of the National Institute for Health and Care Excellence (NICE), told MPs on the House of Commons Health Select Committee that "when clinical trial results are kept hidden, the contribution of patients gets ignored." Oxford University Hospitals and the Open University, the largest academic institution in the UK, have also supported AllTrials.

When individuals cannot obtain the results of clinical trials, it is time to exert organized public pressure on the institutions that can effect a change in policy. Please sign the AllTrials petition, and please ask your representatives - wherever you happen to live - to support the campaign.

You can sign the AllTrials petition here.

Find your MP - British Parliament - here.

Find your Senators and Congressional representatives here

Keeping PACE: Patients Denied Access to Full Data from PACE Trial 

How is That Recovery?


From: QM FOI Enquiries

Queen Mary, University of London

16 September 2014

Dear Mr. Matthees

Queen Mary has now concluded its internal review procedures on this request.

The decision of the internal reviewer is to uphold the original decision to withhold the information you requested.

We apologise for the delay, which was down to staff leave and the commencement of the new academic year.

If you remain dissatisfied you have the right to appeal to the Information Commissioner’s Office. Please see [1] for details.

Yours sincerely

Queen Mary University of London
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