OUR COMMUNITY WILL NOT SUFFER STIGMA AND DISTORTION

[Countrygirl]

https://www.meaction.net/2019/03/23...gdmwN-sWV1E-HNFyp-T73LXeOeHXrujkZm3rTu_sYscoE

OUR COMMUNITY WILL NOT SUFFER STIGMA AND DISTORTION

Last week was a difficult time for the ME community as we watched a few journalists deride and dismiss the medical concerns of an entire patient population: us, our friends, our families. Reuters is responsible for gaslighting millions of suffering people around the world.

#MEAction has emailed a version of this letter to every journalist and editor who published an article stigmatizing people with ME. We encourage the community to reach out to journalists and editors as well, focusing on the narrative outlined in our letter. It goes without saying that we also urge our community to remain calm and factual in responses, and to avoid ad hominem language.

We have encouraged the community not to engage this toxic narrative online, which would give this false, damaging narrative oxygen and attention by sharing it across social media. This strategy was proposed after conversation over several weeks with staff and a team of volunteers from #MEAction UK as we knew that a negative article about the ME community was imminent. At the same time, we encouraged people to comment below the articles drawing on points from our letter.

Dear Editor,

We are writing with deep concerns about Kate Kelland’s recent article, Special Report: Online activists are silencing us, scientists say.

Despite Kelland’s framing, the debate is not about a psychological versus a purely biomedical concept of myalgic encephalomyelitis (ME), but pseudoscience versus science. The men Kelland champion in her article have produced poorly-designed research that has drawn criticism from the scientific community. Kelland’s article omits the 100+ scientists who have called for an investigation and retraction of the PACE trial study based on its numerous methodological flaws.

Kelland’s article omits the 40+ researchers and academics who supported the temporary withdrawal of the Cochrane review of graded exercise therapy for ME/CFS based on concerns about methodological flaws in cited studies, explicitly stating that their decision was in no way due to “patient pressures”.

The article fails to report that people with ME see their health deteriorate after undergoing graded exercise therapy (GET), the therapeutic approach endorsed in the PACE trial. A survey from the UK with over 1000 respondents reported that over 80% experienced worse health outcomes following GET. Yet due in no small part to inflated reports of success by the original authors, the PACE trial continues to serve as frontline evidence to support the treatment of people with ME today.

Furthermore, there is growing evidence that people with ME/CFS experience physiological abnormalities to exercise, including reduced blood flow to the brain and heart, reduced oxygen uptake in hemoglobin, reduced oxygen utilization, and abnormal gene expression. It took the Lancet 12 years to retract the paper supporting a link between autism and the MMR vaccine, which has done inestimable damage.

The methodological flaws of the PACE trial have likewise done irreparable damage to people with ME: stalling biomedical research, quashing funding, contributing to stigma in the clinic and at home, and leading to dismal health outcomes for people with ME. The PACE trial paper is now flagged by PLoS One with an ‘expression of concern’. In a recent UK House of Commons Parliamentary debate, more than 40 MPs passed a motion to support increased funding into biomedical research, and the suspension of graded exercise therapy.

The Danish Parliament recently announced that it will unanimously support using the World Health Organization (WHO) classification of ME as neurological. The US CDC has removed GET and CBT from its recommendations for treatment and stated that graded exercise may cause harm. The US AHRQ downgraded the evidence for GET and CBT and recommended that Oxford -- the broad diagnostic criteria used to recruit people for the PACE trial -- be retired.

Meanwhile, exciting projects focused on epidemiology, etiology, and treatment push forward at Harvard, Cornell, Columbia and Stanford, with all-star scientific teams. The US NIH funded its first research centers to study ME. And the UK Biobank to study genetics of ME launched, gathering the data of thousands. Read more about ME research.

A sea-change in science has led to a shift in the way researchers and clinicians understand ME. And it goes without saying that this is an unsettling situation for people who have staked their careers on the safety and efficacy of GET and CBT for people with ME. All this renders Kelland’s recent article, Special Report: Online activists are silencing us, scientists say, biased reporting. In addition, Ms. Kelland and Reuters have contributed to harm by promoting a potentially deleterious treatment as safe, and by framing a disabled population as violent by default.

We urge Reuters to reconsider this stance and hope they will reach out to us or other people with ME with any questions they have about ME’s history, the science behind the condition, and developments in research groups around the world.

Sincerely, #MEAction Network

 

[Countrygirl]

I have just sent it to the deputy editor of the Sunday Independent who rang me about ME a few weeks ago.

 

[Judee]

Awesome response letter.

Thank you to all of you at #MEAction & #MEAction UK for writing it and advocating for the ME/CFS community this way!!!!!

 

[Wolfcub]

Thank you @Countrygirl And thank you #MEAction & #MEAction UK.

 

[Hip]

Another fact conspicuously absent from Kelland’s article in the long-standing involvement of both Sharpe and Wessely with the shady disability insurance company UNUM (formerly UnumProvident), which the BBC described as a "rogue" company.



Here is a quote from Dr Byron Hyde. It shows how Wessely was paid by the disability insurance industry to make ME/CFS look as it if is an "all in the mind" illness:

Several years ago I was lecturing in British Columbia. Dr [Simon] Wessely was speaking and he gave a thoroughly enjoyable lecture on M.E. and CFS.

He had the hundreds of staff physicians laughing themselves silly over the invented griefs of the M.E. and CFS patients who according to Dr Wessely had no physical illness what so ever but a lot of misguided imagination. I was appalled at his sheer effectiveness, the amazing control he had over the minds of the staid physicians….His message was very clear and very simple. If I can paraphrase him: "M.E. and CFS are non-existent illnesses with no pathology what-so-ever. There is no reason why they all cannot return to work tomorrow."

The next morning I left by car with my crew and arrived in Kelowna British Columbia that afternoon. We were staying at a patient’s house who had severe M.E. with dysautanomia and was for all purposes bed ridden or house bound most of the day. That morning she had received a phone call from her insurance company in Toronto. (Toronto is approximately 2742 miles from Vancouver).

The insurance call was as follows and again I paraphrase: "Physicians at a University of British Columbia University have demonstrated that there is no pathological or physiological basis for M.E. or CFS. Your disability benefits have been stopped as of this month. You will have to pay back the funds we have sent you previously. We will contact you shortly with the exact amount you owe us".

That night I spoke to several patients or their spouses came up to me and told me they had received the same message. They were in understandable fear.

What is important about this story is that at that meeting it was only Dr Wessely who was speaking out against M.E. and CFS and how … were the insurance companies in Toronto and elsewhere able to obtain this information and get back to the patients within a 24 hour period if Simon Wessely was not working for the insurance industry… I understand that it was also the insurance industry who paid for Dr Wessely’s trip to Vancouver.

― Byron Hyde

Source here. The above quote appears to have originally come from Dr Byron Hyde's website www.nightingale.ca in 2011, but it's no longer on the site now.