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


  1. I have read your post and I feel that it requires a response to establish a balance of views.

    Your statements "What the citizens of Great Britain need is more lawsuits. Unfortunately, the British interpretation of common law is that nothing need ever change." demonstrate a surprising level of ignorance and arrogance. With regard to the PACE trial specifically, there is already a problem with applications being struck out as "vexatious" because of the large numbers of requests being made. This not specific to PACE; it is how the FOIA process works generally, both here and in other jurisdictions. Incidentally, the term "Great Britain" is not correct in this context; it should be "the UK".

    From my personal perspective, I have written about the PACE trial in various posts, often with generous assistance from other patients/activists - see this one in particular I have the used the Freedom of Information Act (FOIA) process on several occasions - once with notable success, as documented in this blog post from November 2012 I have recently made another FOIA request which was also successful and I have passed the information on for others to use in due course.

    I would also be interested to know how you arrive at your conclusion that "the British [sic] interpretation of common law is that nothing need ever change". I qualified as a barrister in the UK in 1987. I have a good working knowledge of our legal system both as a practitioner and an academic. However, I find your observation baffling.

    In one short blogpost, you have completely dismissed the vast body of ongoing work by an army of ME/CFS patients and activists in the UK. It is widely accepted that the PACE trial was a farce, manipulated by its authors and that it has had a negative impact on other countries. However, to attribute responsibility for that specifically to the UK patient group is grossly disproportionate and offensive.

    I hope that I would not publicly criticise activists in another country for two reasons: firstly, I would not presume to have the knowledge to be in a position to do so and secondly, how can such animosity possibly benefit any of us?

    I believe that Patricia Carter has already raised concerns regarding Dr Ben Goldacre on your CFS Treatment Guide blog so I will not repeat them here.

  2. To get a picture of what happens when a PWME do manage to get to court in the UK have a read about the NICE guidelines case.
    We now know what he actually meant by the term “vigorous”. Less than 48 hours before the case was to be heard, NICE ambushed the Claimants’ legal team with the threat of a significant wasted costs application. When the hearing began two days later, many observers both lay and legal, were puzzled by the lacklustre presentation of the Claimants’ Counsel, Mr. Jeremy Hyam. The commanding performance he had given at the preliminary (permission) hearing before Mr Justice Cranston was now conspicuously absent.

    There was a reason for Jeremy Hyam’s change of demeanour. He and his instructing solicitor Jamie Beagent of Leigh Day & Co had just been threatened with a career-damaging subsidiary legal action by NICE. This threat was subsequently made good. In July 2009 Mr Justice Simon (the same Judge who dismissed the Claimants’ challenge) ordered Leigh Day & Co to pay NICE £50,000 in wasted costs, as compensation for improper conduct of the case.

  3. Are you aware of who Dr. Ben Goldacre is? He is a psychiatrist, worked with Simon Wessely and he started the Bad Science Forum so he could bash ME patients. See: Likely Source of Anonymous Complaint Against UK's Dr. Sarah Myhill is Site of Controversial Doctor/Writer Ben Goldacre
    Did Dr. Ben Goldacre's Bad Science Forum Attacks Lead to Suicide?
    Suicide Alert. Ben Goldacre and his dysfunctional Forums.

    I am very wary of anything that comes from Ben Goldacre--the Bad Science Forum guy.


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