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Advocacy News and Issues / Occupy CFS: Turnover, 8/27/2014
« Last post by Patricia on Today at 08:06:32 AM »


August 27th, 2014 Jennie Spotila

   Multiple sources have confirmed that Dr. Nancy Lee is stepping down as Designated Federal Officer of the CFS Advisory Committee. Also departing is her assistant DFO, Marty Bond.

Dr. Lee was a lightning rod for criticism and controversy. During her term as DFO, we saw violations of the Federal Advisory Committee Act and heard credible allegations that Dr. Lee intimidated several members of the committee for expressing their views (an HHS investigation found no wrongdoing). Dr. Lee was also blamed for the move to hold CFSAC meetings by webinar and for contractor incompetence in managing those meetings. Perhaps the two most glaring controversies were Dr. Lee’s apparent leadership role in the creation and funding of the Institute of Medicine contract, and for publicly admonishing ME/CFS advocates for their vitriol and instructing us to call out those advocates out. As a result of all this, the relationship between the ME/CFS advocacy community and the DFO of CFSAC has deteriorated to the lowest point I have ever seen it, and there were formal requests to have Dr. Lee replaced.


Social sciences suffer from severe publication bias 

Survey finds that ‘null results’ rarely see the light of the day.
  28 August 2014

When an experiment fails to produce an interesting effect, researchers often shelve the data and move on to another problem. But withholding null results skews the literature in a field, and is a particular worry for clinical medicine and the social sciences.

Researchers at Stanford University in California have now measured the extent of the problem, finding that most null results in a sample of social-science studies were never published. This publication bias may cause others to waste time repeating the work, or conceal failed attempts to replicate published research. Although already recognized as a problem, “it’s previously been hard to prove because unpublished results are hard to find”, says Stanford political scientist Neil Malhotra, who led the study.

His team investigated the fate of 221 sociological studies conducted between 2002 and 2012, which were recorded by Time-sharing Experiments for the Social Sciences (TESS), a US project that helps social scientists to carry out large-scale surveys of people's views.

Only 48% of the completed studies had been published. So the team contacted the remaining authors to find out whether they had written up their results, or submitted them to a journal or conference. They also asked whether the results supported the researchers’ original hypothesis.

Of all the null studies, just 20% had appeared in a journal, and 65% had not even been written up. By contrast, roughly 60% of studies with strong results had been published. Many of the researchers contacted by Malhotra’s team said that they had not written up their null results because they thought that journals would not publish them, or that the findings were neither interesting nor important enough to warrant any further effort.

“When I present this work, people say, ‘These findings are obvious; all you've done is quantify what we knew anecdotally’,” says Malhotra. But social scientists often underestimate the magnitude of the bias, or blame journal editors and peer reviewers for rejecting null studies, he says. His team's findings are published today in Science1.
                                                            Poisoned by success

The problem may be bigger than the TESS sample suggests. Each survey design proposed to TESS is peer-reviewed, to ensure that it has sufficient statistical power to test an interesting hypothesis; weaker studies in these fields would probably have an even lower rate of publication. “It’s very likely that this study underestimates the true extent of the problem,” says Daniele Fanelli, an evolutionary biologist who studies publication bias and misconduct, and is currently a visiting professor at the University of Montreal in Canada.

In 2010, Fanelli surveyed the publication bias across a range of disciplines, and found that psychology and psychiatry had the greatest tendency to publish positive results2. “But it’s not just a social-science issue — it’s also common in the biomedical sciences,” says Hal Pashler, a psychologist at the University of California, San Diego, in La Jolla. “Both are really poisoned by only hearing about the successes.” (See '‘Ethical failure’ leaves one-quarter of all clinical trials unpublished'.)

Social scientists are already trying to tackle publication bias (see ‘Replication studies: Bad copy’). Malhotra is involved in the Berkeley Initiative for Transparency in the Social Sciences, which advocates a range of strategies to strengthen social-science research. One option is to log all social-science studies in a registry that tracks their outcome — a model that is already used to help ensure that null results from drug trials see the light of day. Meanwhile, Pashler has set up a website, PsychFileDrawer, to capture null results generated by attempts to replicate findings in experimental psychology.

These remedies have not been universally welcomed, however. “There’s been a lot of pushback,” says Malhotra. Some social scientists are worried that sticking to a registered-study plan might prevent them from making serendipitous discoveries from unexpected correlations in the data, for example. But most accept the need for change, adds Pashler: “We’re all waking up to this.”


I posted this on the CDC Whistleblower thread.

Congressman Posey was questioning them about Thorsen last year.

Congressman Bill Posey is my Congressman.

He is questioning the CDC here regarding Thimerisol in Vaccines and Autism.

I did a transcript of this video to go with it.

Congressman Posey Questions CDC on Autism Research,
Dr. Boyle squirms on the hot seat!

Posey: Dr Boyle, my predecessor, Cong Weldon was a well respected competent medical doctor, and a great deal of esoteric expertise on this subject that i'll probably never have, but I glean from him some certainty that he felt Thimerisol in vaccinations definitely was a contributing factor to Autism and I read not very long ago that an article that it said until the wonderful people like us, introduced vaccinations to Africa, the African children, basically were Autism free, they never heard of Autism, never had a case, are you familiar with that or heard that before?

I wonder if the CDC has conducted a facilitated study comparing vaccinated and unvaccinated children yet, have you done that?

Dr Boyle CDC: We have actually done a number of studies looking at the relationship between Thimerisol in vaccines and Autism and other developmental disabilities.  Um.. there have been since actually over the last decade there have been numerous studies looking at the relationship between vaccines...

Posey: That the CDC conducted?

Dr Boyle CDC: Some of them were conducted by the CDC, others were conducted by..

Posey: How many would you say, would you estimate?

Dr Boyle CDC: I would actually have to check with the specific numbers but I know there were 2, 1 large study looking at varied neuro-developmental disorders and the 2nd one   was focused specifically on Autism. Those were fairly recently.

Posey: Would you see that Miles gets a copy of those?

Dr Boyle CDC: Of course

Posey: Do you believe additional studies would provide useful data in accessing the safety in childhood vaccines?

Dr Boyle CDC: The IOM has evaluated this data in 2004 and most recently in 2011, um, and, their conclusion again was not just looking at the work that was done at CDC but the total body of evidence was suggesting that um vaccines and their components did not increase the risk of Autism.

Posey: My time is very limited here. So clearly, definitely, unequivocally you have studied vaccinated vs. unvaccinated?

Dr Boyle CDC: We have not studied vaccinated vs. unvaccinated...

Posey:  Ok, Nevermind, that was the meaning of my question and you have wasted 2 minutes of my time.

What steps has the CDC undertaken to ensure the integrity of the research that was performed by Dr. Thorsen, who has you know has been indicted for misconduct and mis-allocation of resources?

Dr Boyle CDC: So the um a Dr Thorsen a.. who was a co-investigator on a couple of studies that ah came out on autism um was really just one investigator and um that body of evidence um related to vaccines and autism..

Posey: Have you gone back to validate the variety of studies that he participated in? I mean you know this guy is a HUMUNGOUS SCUMBAG, one of the most wanted men on earth and you relied upon him for data to determine whether thimerisol had a negative effect ?

Dr Boyle CDC: 2 studies don't conclude a body of work um the body of work that's related to relating vaccines to autism

Posey: You told me you only had 2 studies relating to vaccines, vaccinated and unvaccinated so you must figure 2 studies have some weight.  Im running out of time quickly here.. You mentioned that you only have Thimerisol and multivial, why is that?

Dr Boyle CDC: I was actually going to get that information from the committee

Posey:  Ok, because I would think if they only have it in multi vial and eliminate it in the other vials there is a reason?

Dr. Boyle CDC:  There is definitely a reason, so I was going to clarify that, there are single dose vials and multi-dose vials

Posey: And they took it out of everything. but the multi-dose vials?

Dr Boyle CDC:  That's correct.

Posey: Ok, how many multi-dose vials are there?

Dr Boyle CDC: I can provide you that information.

Posey: Um, Ive seen a chart that ranks the longevity of the 30 nations with the best mortality rates in the world, starting with Iceland, Sweden, Singapore, and on down, we didn't even make the top 30, we are the 34th, and ironically we require more vaccinations than any other country that's healthier that has the less mortality than us. Do you see any correlation, whatsoever, either one of you, that the worse 34th mortality rate and the most vaccinations to the ones with the least required vaccinations and the lowest mortality rates?

They also have children that passed age 20 in those countries too!

Dr Guttmacher CDC: There are many factors obviously involved in longevity for any country, ah, the one thing we do know about vaccinations is that they are among the major for public health reasons why our generations today live much longer than the previous generations, they are perhaps the most successful public health movement in the world.

Posey:  Nobodies talking about for or against vaccinations, we are talking about Thimerisol in vaccinations and multiple bomb blast of vaccinations in short period of time on very...

Thankyou Mr Chairman, my time is up.

Advocacy News and Issues / PANDORA writes to P2P (again)
« Last post by Patricia on Today at 03:16:48 AM »

In an apparent CYA attempt, PANDORA has written to the P2P workshop again.  Having already sold out the interests of patients by working with the P2P and recommending exercise even for severe ME patients, at this late date--when the P2P timing is already past the time allotted for "shareholder" input, PANDORA has written them another letter.  Now that they have gotten their "seat at the table" with their government friends by selling out patients' interests, PANDORA writes a letter suggesting that P2P do a full examination of the definition of the illness and that they change the timing for public comment, which is scheduled to be just prior to Christmas.

This is a CYA move if there ever was one.  Neither of these situations is new.  PANDORA could have said these things early on, at the start, when their proposals would have made more sense.  However, they have waited until this late date.  Why?  It appears to me that they have now confirmed their solid relationship with their NIH employee friends at P2P, so they believe they can give the appearance of attending to patients' interests without interfering with that governmental relationship.  And this way, when the P2P comes out with their psychological definition of ME/CFS and recommendations that research be done on antidepresssants, CBT and GET for treatment, PANDORA can say--why no, they are not part of this--they objected.

Sorry, PANDORA.  It won't work.  Patients are not stupid.  We can see what you are trying to do.  You helped your buddies at NIH set this up and now that the chips are about to fall, you are trying to make it appear that you did not assist them.  Too little too late, PANDORA.  You have shown your true colors and patients have seen them.

And by the way, PANDORA, you say there were six other organizations who were part of this but you only gave the name of one.  Who are the others?  Why don't you give the names of the organizations?


 August letter sent to the NIH Pathways to Prevention Working Group:

We, the undersigned organizations representing ME/CFS patients across the U.S., are writing to express our concern about two issues. This is a follow up to a letter sent earlier (July 25, 2014) by others in the community who have highlighted the same issues.

1. We see a significant gap in the draft agenda for the P2P Workshop on ME/CFS. Specifically,
discussion of case definitions has been relegated to a 20 minute presentation ("Case Definition Perspective") outside the context of the Key Questions and Panel discussion.

We strongly urge that the P2P Workshop Agenda be modified to include a full examination and public discussion of this original Key Question: Do the set of ME/CFS definitions encompass the same disease, a spectrum of diseases, or separate discrete conditions and diseases that do not belong together?

It is absolutely essential if the NIH expects to have the results of this study accepted by
the ME/CFS patient and advocate community that this foundational question be given
sufficient time for a full discussion.

Existing data suggest that the several case definitions identify patients with depression, deconditioning, other non-specified fatiguing conditions, as well as a disease characterized by post-exertional malaise. This lack of diagnostic sensitivity obscures the true nature of the disease described by patient s by blurring the distinctions between disparate conditions. There is also a significant and real risk that uncareful use of various nonspecific definitions may lead to including people who have missed diagnoses of major medical diseases which are treatable if properly diagnosed.

We believe that discussion of existing research literature, the prevalence, natural history, treatments, gaps in research, and the rest of the agenda will only be effective if it is grounded in a thorough discussion and understanding of the problems and issues caused by the xistence of multiple case definitions which are being used interchangeably.

You can see the justification for this request here. It is unfortunate that the timing of the P2P study was not better coordinated with the Institute of Medicine study, which is considering this very question in depth.

2. According to the P2P timetable, the final report will be issued in draft format and open for public comment for two weeks between approximately Dec. 12 and Dec. 25.  Given the comment deadline coincident with the Christmas/New Year holiday period, and considering the disability of the ME/CFS patient population, we urge the group to provide accommodation for that disability by extending the comment deadline for an additional two to three weeks, for example until January 15, 2015, if the comment period begins on Dec. 11.

Granting this accommodation would not interfere significantly with the P2P process flow, but would enable the ME/CFS patient community more time to study the report and provide thoughtful, meaningful and necessary input. This will enable a better set of recommendations and would be much appreciated by the patient community, for whose benefit this study has been undertaken.

Signed by PANDORA Org and six other patient organizations with special thanks to Massachusetts CFIDS ME & FM Association.
Other health news / CDC scientific fraud: an update on Dr. Poul Thorsen
« Last post by Patricia on Today at 02:48:23 AM »

CDC scientific fraud: an update on Dr. Poul Thorsen who authored fraudulent study 'disproving' vaccine-autism connection and stole millions of dollars 

Thursday, August 28, 2014 by: Jonathan Benson, staff writer

Tags: MMR vaccine, autism, scientific fraud

(NaturalNews) The very legitimacy of the U.S. Centers for Disease Control and Prevention (CDC) as a trustworthy safeguard of public health hangs in the balance as evidence continues to emerge about rampant deception, fraud and even money laundering within the agency. Specifically with regard to vaccines and autism, key players involved in the propaganda campaign to deny this link are now being exposed as liars working on behalf of the vaccine industry.

One such liar is Dr. Poul Thorsen, a Danish scientist who was indicted for stealing millions of dollars from the CDC and using it to cover up vaccine dangers. Thorsen, as you may recall, was heavily involved in producing a stream of fraudulent studies that supposedly "disproved" the now-evident link between vaccines and autism. The CDC has also continually cited Thorsen's studies as "evidence" that vaccines are safe, declaring the debate to be over in light of their findings.

But, one by one, these and various other studies, including a prominent one published in the journal Pediatrics, are being called into question due to fraud and author conflicts of interest. And to make matters worse, the U.S. Department of Justice (DOJ) has yet to even follow through with its indictment of Thorsen, who continues to produce phony studies from his cozy position at Sygehus Lillebaelt Hospital in Kolding, Denmark.

Thorsen funneled millions of taxpayer dollars toward vaccine-autism coverup As we reported back in 2011, Thorsen had previously worked for the CDC, overseeing millions of dollars' worth of grant money that we now know was used to prop up the myth that vaccines are safe. The CDC had long perpetuated this myth, so it was in the agency's best interests to quell public fears by generating a series of studies to this end.

Thorsen was later caught stealing money from the CDC and using it in his home country of Denmark to produce the infamous "Denmark Study," the holy grail that supposedly settled, once and for all, the vaccine-autism debate. Except it didn't. Thorsen was indicted by a federal grand jury in Atlanta, Georgia, on charges of wire fraud, money laundering and defrauding research institutions of grant money.

That was more than three years ago, and Thorsen still hasn't been brought to justice. As explained by Age of Autism, Thorsen faces up to 260 years in prison and $22.5 million in fines if convicted on all charges. But as it currently stands, Thorsen remains a free man -- at least for now. With new evidence showing rampant fraud and data manipulation in other vaccine-autism studies at the CDC, justice could be on the horizon.

As we've been reporting in the past few days, at least three top CDC scientists are now under the gun for their involvement in a 2003 study that, thanks to a key whistleblower, has been proven fraudulent. Like Thorsen's research, this particular study had claimed that no link exists between vaccines and autism. But according to Dr. William Thompson, an epidemiologist who worked on behalf of the CDC to investigate a potential link between vaccines and autism, data from this study was manipulated to cover up what has now been confirmed to be a definitive link.

"Dr. Frank DeStefano, Dr. Marshalyn Yeargin-Allsop, Dr. Coleen Boyle -- they knew," explains Dr. Andrew Wakefield in a new film on the scandal, referring to the three CDC scientists who were complicit in the coverup. "They let it happen and they could have stopped it."

You can watch Dr. Wakefield's groundbreaking film here:

You can also contact the White House at 202-456-1414 and request for President Obama to instruct Secretary Kerry and Attorney General Holder to bring Thorsen to the U.S. and prosecute him, and you can call Congressman Darrell Issa, Chairman of the Committee on Oversight and Government Reform, at 202-225-3906 and ask for a hearing to be conducted on Thorsen as soon as possible. Further nstructions for doing this can be found in the last paragraph of the following piece by Age of Autism:

Sources for this article include:

Takeda, Lilly lose bid to overturn $9 billion award for hiding cancer risk   

Fri Aug 29, 2014 7:40am IST

    Yasuchika Hasegawa, next chairman and current CEO and president of Takeda Pharmaceutical Co., speaks during a news conference in Tokyo April 2, 2014.
Credit: Reuters/Issei Kato

(Reuters) - Takeda Pharmaceuticals and Eli Lilly & Co lost a bid to overthrow a combined $9 billion punitive-damage award by a U.S. jury for hiding cancer risks associated with their Actos diabetes drug, according to a court ruling.

 "Plaintiffs have pointed to sufficient evidence from which the jury could have concluded that the 'information' about bladder cancer contained in Actos labels did not adequately warn of the increased risk of cancer," said U.S. District Judge Rebecca Doherty of the Western District of Louisiana on Wednesday.

Punitive damages are meant to discourage companies from bad conduct. Compensatory damages are meant to pay victims for their actual losses.

Takeda had decided to contest the award in April and legal experts had said at that time that it was unlikely that such a large award would stand after challenges in court by both companies.

Actos, an oral Type 2 diabetes medication that regulates blood sugar levels, has been on the market since 1999. It is currently banned in Germany and France.

Neither Takeda nor Eli Lilly were immediately available for comment outside normal business hours.

(Reporting by Anjali Rao Koppala in Bangalore; Editing by Lisa Shumaker)
Advocacy News and Issues / UK: Example FOI request
« Last post by Patricia on Today at 02:39:27 AM »

PACE Trial: Recovery Rates and Positive Outcome Rates (repeat request)  Mr Courtney made this Freedom of Information request to Queen Mary, University of London

 The request was refused by Queen Mary, University of London.
  From: Mr Courtney
29 October 2013   The PACE Trial.
     "Comparison of adaptive pacing therapy, cognitive behaviour
     therapy, graded exercise therapy, and specialist medical care for
     chronic fatigue syndrome (PACE): a randomised trial"
     Dear Queen Mary, University of London,
     This is a new FOI request for information previously requested and
     declined. Please treat this as a new FOI request. (FOI legal
     procedures require me to repeat a previous request, if I am to
     follow-up the request.)
     For all the therapy groups (APT, CBT, GET, SMC), I would like the
     'recovery' rates, and the 'positive outcome' rates (the 'primary
     efficacy measure'), as defined in the published trial protocol for
     the PACE trial.
     Full details as follows...
     Recovery Rates.
     I would like the proportion of participants, in each therapy group,
     who achieved a 'recovery', as defined in the published trial
     A 'recovery' is defined as follows:
     "Recovery" will be defined by meeting all four of the following
     (i) a Chalder Fatigue Questionnaire score of 3 or less [note, that
     the relevant questionnaires should be scored using the bimodal
     scoring method],
     (ii) SF 36 physical Function score of 85 or above,
     (iii) a CGI score of 1, and
     (iv) the participant no longer meets Oxford criteria for CFS, CDC
     criteria for CFS or the London criteria for ME.
     Positive Outcome rates.
     I would like the proportion of participants, in each therapy group,
     who achieved a 'positive outcome' (including the proportion of
     'overall improvers'), as defined in the published trial protocol.
     A 'positive outcome' is defined as follows:
     "The 11 item Chalder Fatigue Questionnaire measures the severity of
     symptomatic fatigue, and has been the most frequently used measure
     of fatigue in most previous trials of these interventions. We will
     use the 0,0,1,1 item scores to allow a possible score of between 0
     and 11. A positive outcome will be a 50% reduction in fatigue
     score, or a score of 3 or less, this threshold having been
     previously shown to indicate normal fatigue.
     [Note, that the relevant questionnaires should be scored using the
     bimodal scoring method.]
     "The SF-36 physical function sub-scale measures physical function,
     and has often been used as a primary outcome measure in trials of
     CBT and GET. We will count a score of 75 (out of a maximum of 100)
     or more, or a 50% increase from baseline in SF-36 sub-scale score
     as a positive outcome.
     "Those participants who improve in both outcome measures will be
     regarded as overall improvers."
     Details of the trial protocol:
     Protocol for the PACE trial: A randomised controlled trial of
     adaptive pacing, cognitive behaviour therapy, and graded exercise
     as supplements to standardised specialist medical care versus
     standardised specialist medical care alone for patients with the
     chronic fatigue syndrome/myalgic encephalomyelitis or
     Peter D White et al.
     8 March 2007
     BMC Neurology 2007, 7:6
     Yours faithfully,
     Mr Courtney
   Link to this
   Mr Courtney left an annotation (29 October 2013)    This is a repeat FOI request. The previous request can be found here:

WATCH: Is this the future of science funding?

Fiona MacDonald         

Thursday, 28 August 2014   

 Australian researchers have developed a crowd-funding platform to support young scientists and the next generation of world-changing ideas.

With financial support for science around the world disappearing, it’s harder than ever for young scientists to break into research careers, which means we could be losing a lot of talented minds who can’t afford to fund their projects.

But a new crowd funding platform called Thinkable aims to change that. Founded by Ben McNeil, an oceanographer from the University of New South Wales (NSW) in Australia, in collaboration with other Australian researchers, the platform is “democratising science”.

The website allows the general public to support upcoming research, either through being “fans” or donating as little as a $1 as a sponsor. All sponsors will be able to track the research they’ve supported in their own feed, to keep up to date with where their money is going.
And all the research is peer reviewed to make sure it’s based on accurate science, so that you know your money isn’t going to funding someone’s latest film.

According to the About Us page:

"Our mission is to connect the world with scientific research and fund transformative new ideas. We hope to spur collaboration, spread knowledge and support the next generation of thinkers and innovators."

This isn’t the first time researchers have crowd-funded science, but it’s the first platform that allows the public to actively learn and engage with cutting-edge research as it happens in the lab.

We can’t wait to see the ideas that emerge.

Check out their video above to find out more. And sign up to be part of the next generation of world-changing ideas.

 Source: The University of NSW


Quote from the report:

Current situation

-          ‘Coming out’ about the harassment has led to increased support for CFS/ME researchers, for example, from colleagues who were not aware of the situation.
·         (quote 16)


-          Harassment is most damaging in the form of vexatious FOIs.
-          Complaints are also causing problems.  Researchers are dealing with complaints about them to the GMC.
-          House of Lords Debates on CFS/ME can result in Parliamentary Questions which often require detailed responses
·         (quote 17) …. Researchers are using strategies to reduce the impact of harassment and put the case for research into CFS/ME incuding:
-          Learning about the FOI Act and using strategies to reduce time spent responding, eg putting minutes of meetings onine
-          Coming together as a research community to respond to criticisms eg the joint letter in response to criticisms of Simon Wessely receiving the John Maddo prize.
-          Working with trusted journalists to cover the problems associated with CFS/ME research
-         Esther Crawley and Stephen Holgate are establishing a research collaborative including researchers, charities and other interested parties.  There will be a launch event on 22nd April.
·         (quote 18) from Action Points
-          SMC—run FOI Act brainstorm
-          ALL—look for opportunities to publicise CFS/ME research and give background information about the condition
-          Support4rs—work with Peter White and Simon Wessely to develop resources for deaing with harassment
-         SMC—run a press briefing on biosocial illness to provide public understanding.  Fiona Fox to get information from Trudie Chalder and Rona Ross-Morris.
Subsequent action by the UK CMRC can be seen in the context of these Action Points (above).

One SMC ‘strategy’ to reduce ‘harrassment’ was to “put minutes of meetings onine.”

 Following the 22nd May 2013 meeting of the Executive Board of the UK MRC Sonya Chowdhury emailed “Hi all—please find attached the meetings of our meeting and a summary for public consumption.  I have deliberately made the summary detailed so that people don’t feel we’re only providing limited information…In the future, I would suggest that the summary is approved by the Chair and Vice Chair so that they can go up immediately after the meeting.”  (quote 19)
- 3rd June, Sonya Chowdhury to group “As agreed we can now share the above summary [CFSMERC minutes 23.5.13”] on websites etc. and the minutes are for the Board only.  (quote 20)
- 11th October, Sonya Chowdhury to group “Hi All—please find attached: Chair-approved minutes of our meeting on Monday; Chair-approved summary notes of the meeting which will go on our website, as previously agreed.” (quote 21)
- 14th January 2014, Sonya Chowdhury to group “Attached are the chair-approved minutes (for the Boar only) and the summary notes (for pubic consumption).” (quote 22)
·         Re the SMC Action Point regarding “opportunities to publicise CFS/ME  research and give background information about the condition” (reference quote 18); on 17th April Esther Crawley informed the Collaborative that the press release regarding the launch had been rewritten and “hopefully incorporates most of your comments.  I hope this is now the final version.” (quote 23)
·          She clarified that this press reease concerned the launch of the Collaborative, and not the press conference, which was to take place separately.  Journalists were sent a separate invitation to the press conference.  She explained:  “journalists wil already have received this invitation from the SMC about the press conference (pasted below).” (quote 24)
·         The press conference invitation ‘pasted beow’ began—“Science Media Centre News Briefing—What? Chronic Fatigue Syndrome—unravelling the controversy” (quote 25)
-          It stated “Chronic Fatigue Syndrome (CFS; also known as ME) is an incredibly controversial field
, not just in terms of public perception, diagnosis and treatment but even for the very researchers trying to help who have experienced campaigns of harassment from some patients.” (quote 26)
-          It went on to state that “The disease affects over 600,000 people in the UK” inviting journalists to come aong to find out amongst other thing “What imaging studies are showing us about overactive brains”.  (quote 27)
-          For further information journalists were asked to contact Dr. Edward Sykes, Head of Mental Health at the Science Media Centre. (quote 28)
·         Dr. Chares Shepherd of the MEA objected in an email of the 17th April:
-          1.  I stil don’t believe it is sensible to drag the harassment campaign into the press reporting of the launch of the collaborative …I just don’t see what is going to be achieved by encouraging journalists to include this aspect in their reporting of the event. (quote 29)
-          2.  Could we also include myalgic encephalomyelitis (or encephalopathy) in the title and CFS/ME elsewhere.
(quote 30)
-          3.  I don’t know what ‘overactive brains’ are in relation to ME/CFS.  Sounds a bit like anxiety …. I don’t think this is a good term to be feeding the press.  (quote 31)
·         The response from Esther Crawley was “Just to clarify—the SMC invitation was included [in hr previous email] just to explain why we have done the press release as we have.  It is not for pubic consumption.  It has already gone out.” (quote 32)
·         Further to the SMC Action Point regarding “opportunities to publicise CFS/ME research and give background information about the condition” (reference quote 18): on 12th March 2014, Esther Crawley emailed to the group:  “There is a competition to present research to Parliament.  The aim is to provide information about research to try and ensure funding is secure for next year.  If successful the winners will have posters about projects with demonstrable benefits in parliament at a reception on June 3rd this year.” (quote 33)
-          “I have prepared an application (attached) with help from both Stephen and Peter for the CMRC.  We have only 300 words to describe a “project” which has already had health benefits.  Looking at previous successful applications, they expect very lay friendly descriptions of projects that tell a story.  As it is only 300 words, I have included snippets about research that I am familiar with that has already had health benefits (the category I think we should submit under)” (quote 34)
-          “Stephen has obviously helped me a lot with this.  Although we have mentioned the harassment, this is part of the previous story and is to help identify what is new and different at the moment…..” (quote 35)
-          “The deadline is Friday but I will need to submit it tonight …. So if you have any comments, can you let me know as soon as possible? Can you please copy Stephen in please?”(quote 36)
-          The original draft of the 300 word description by Esther Crawley, Stephen Holgate & Peter White included “In the past, the CFS/ME researchers and charities have been divided, with researchers leaving the field because of personal attacks and funding difficulties.” (quote 37)
-          The final submission included:  “…Research has been a powerful tool for change in the UK with a small amount of funding producing significant health benefits.  For example, in children and teenagers, we have shown that it is common, occurs in primary school children; is more common in those from socially disadvantaged families and is very treatable with excellent outcomes.  In adults we have shown it is more common in UK ethnic minorities, described inequalities to accessing health care and shown which treatments are safe and effective.  This research evidence-based approach has encouraged more commissioners to provide services and helped clinicians to improve services, increasing the number of children and adults offered treatment.  (quote 38)
-          After Esther Crawley had sent the draft version out to the Collaborative for comment she sent another email to Stephen Holgate and Peter White:  “As you can see—I have sent the form to the executive.  I mentioned the harassment bit in the email because early feedback suggested this might be a problem with the charities (sigh).” (quote 39)
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