No Dissing! NHS Choices Behind the Headlines needs to repair relationship with its readers

my knightA knight in tarnished amour

Although by no means perfectly dependable, the NHS Choices Behind the Headlines is generally a useful resource for lay and professional consumers bombarded by distorted coverage of science and health information in the media.

I cheered the headline and NHS Choices Behind the Headlines’ coverage  of a PLOS Medicine article

Half of medical reporting ‘is subject to spin’

According to its website

NHS Choices Behind the Headlines

Is intended for both the public and health professionals, and endeavours to:

  • explain the facts behind the headlines and give a better understanding of the science that makes the news,

  • provide an authoritative resource for GPs that they can rely on when talking to patients, and

  • become a trusted resource for journalists and others involved in the dissemination of health news.

NHS choicesThe website explains its origins:

Behind the Headlines is the brainchild of Sir Muir Gray, who set up the service in 2007.

“Scientists hate disease and want to see it conquered,” said Sir Muir. “But this can lead to them taking an overly optimistic view of their discoveries which is often reflected in newspaper headlines.

And then a quote that I will surely use in the future with appropriate credit:

‘In the 21st century, knowledge is the key element to improving health. In the same way that people need clean, clear water, they have a right to clean, clear knowledge’ Sir Muir Gray.

A while ago I covered exaggerated claims by a UK scientist that he was on the verge of providing an inexpensive blood test for pregnant women to determine if they were at risk for depression. The peer-reviewed article  was seriously flawed in itself, but then journalists and media – including notably The Guardian – uncritically broadcast the scientist’s hyped, crassly self-promotional account of the importance of his work. I was pleased that Behind the Headlines  offered a much more sober and balanced perspective.

But in this blog about a story in Behind the Headlines, I’m going to chastise NHS Choices for its disrespect of patients. I will suggest an apology to its readership is in order.

Apparently Behind the Headlines has already received a number of complaints about the story and summarily dismisses them.

trust me 2Being ‘a trusted resource’ is a relationship with a readership that can be damaged by a single bad story that violates readers’ expectations that they are dealing with an unbiased source.

NHS Choices Behind the Headlines’ recent coverage of the PACE follow-up study fell short of its usual performance. Instead of an independent assessment, it uncritically accepted authors’ self-promotion. True to its Behind the Headlines branding, it suggested coverage of the study in the Daily Mail of the PACE was exaggerated, but then NHS Choices and its Bazian consultants failed to apply a basic understanding of clinical trials in parroting the PACE investigators’ hyping of their results.

Compare the title of the Behind the Headlines article: “Exercise and therapy ‘useful for chronic fatigue syndrome’ “ to my recent blog post. You’ll see explain why I think the PACE follow-up was uninterpretable.

By the time of follow-up, many patients were receiving treatment, but not the one to which they had been randomized.

The effects of the initial assignment could no longer be evaluated.

At follow-up, the most straightforward interpretation of the clinical trial was that any differences between groups and outcome had disappeared.

A later blog post will compare the Behind the Headlines account to my critique of the PACE study. But in this one, I’m going to cover an offensive “box” in the Behind the Headlines that was amplified in the gloating comments of the journalist on Twitter and in the comments section of the Mental Elf blog. I then note that in 2014 he had made offensive comments that should have been actionable by Behind the Headlines.

The mark of ethical and responsible coverage of medical articles in the media is that journalists do not rely on investigators’ own account of what they found and what it means. Such single sources have a well-established bias and are known to be vulnerable to investigators’ self-promotion and exaggerated claims.

Rather, the media coverage should introduce a named independent source who can be reasonably expected to offer their interpretations of a study without apparent conflict of interest or other bias. The named independent source should be recognizable as an expert.

The unnamed author/editor of the text in the box

NHS Choices is supposedly committed to providing tools to empower patients and professionals to get behind the headlines to decide for themselves about news coverage. Behind the Headlines is not transparent. The identity of the specific journalist-editor having responsibility for what is said is shrouded in secrecy. So much for being able to evaluate source credibility.

But in this case, the journalist unmasked himself with a tweet.

more 2015 gerald

And then

gerald 2015

oh fuck

 

 

 

Blair became traceable to a website bio

Gerard Blair bio from blog

He can be further associated with a comment left on the blog post by Simon Wessely at Mental Elf

orig Gerald on Mental Elf

But he is a repeat offender. He ridiculed patients last year when he was celebrating another article at he edited for Behind the Headlines.

gerardblair

An analysis of the text in the box

To view in context the text that I will be analyzing, click here.

An ambiguous opening move

It’s fair to say research into PACE has attracted a great deal of controversy. This body of work has been criticised by one of the leading patient associations for people with CFS/ME, the ME Association.

This latest study prompted a press release from the ME Association, claiming its methodology and that of previous studies was flawed and lacked “objective measures of outcome”.

Keep in mind that what is contained in the box is supposed to serve as the sole independent evaluation of the PACE investigators’ well practiced promotion of their study. What is going on here? Is this a bold move at patient empowerment and recognition of patient citizen-scientists as credible sources of critique. After all many people with CF/ME had considerable educational and professional achievement before they were laid low by their illness. And many of them continue to contribute to the scientific literature, as in letters to BMJ.

Here is a well-crafted, well documented example.

But is this nomination of a patient voice as the outside expert a setup? Is this a more devious effort to inoculate the arguments of the PACE investigators against criticism by the mysterious Behind the Headlines author, now unmasked as someone who holds patients in contempt?

The readership of Behind the Headlines is a mixed audience, including GPs and other physicians. Are they going to buy into patient empowerment and patient as citizen-scientist to accept its expertise? Or are readers being primed to dismiss it? And maybe with the suggestion that no credible critics could be found?

We aren’t given the details of why the ME Association considers the PACE as flawed. We don’t know what previous studies the Association criticized as also flawed. We really don’t have a means to understand “objective measures of outcome” unless we do some digging into the literature. But Behind the Headlines is supposed to free readers of the necessity of literature reviews, because it is a trusted source that we can depend on having done it for us.

Then Behind the Headlines undermines any appearance of credibility for the ME Association:

In turn, the ME Association has been criticised by some as pursuing a specific agenda that aims to shut down any research that suggests CFS/ME may have psychiatric, as well as physical, factors.

Among the cheap tricks: who is the mysterious source of this criticism and how do readers evaluate source credibility? We are nonetheless encouraged to dismiss the ME Association as having a “specific agenda.” Can Behind the Headlines find no critics of the PACE trial who have not been criticized or do not have a specific agenda? With critics having only one shot, as a matter of fairness, Behind the Headlines should present a critic untarnished by mysteriously undermined credibility with an argument that can be independently evaluated.

And let’s keep in mind the context: the PACE investigators are accumulating lots of criticism for their aggressively pursuing an agenda in distorted reporting of their study at great odds with the evidence they have produced. And for defying international standards in withholding the data that would allow evaluation of their credibility.

Washed down the drain with any credibility for the ME Association is the notion that research should be scrutinized if it emphasizes the unsubstantiated, but alleged strong psychiatric component to CFS/ME. What evidence is there for this emphasis and what is being lost when the emphasis is so exclusive of other considerations?

Apparently it is okay for a journalist identifying himself with a Behind the Headlines article to disparage a patient group in social media.

Behind the Headlines provides a means for readers to complain. Some readers used it to complain about this story and the journalist’s depiction of it in the social media. Behind the Headlines replied by indicating they had reminded the journalist of a policy prohibiting use of offensive or inappropriate language. The Respondents for behind the Headlines deemed the article otherwise appropriate.

In the UK, it is still okay to disparage patients with chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) because their humanity and commonality with us is not appreciated. Ridicule and disrespect are acceptable speech in polite society, not hate speech.

I lived through a period in the United States where some people were awakened that they could not similarly openly speak with disrespect for black people. Sure, recent events clearly show the Americans have a long ways to go in solving the problem of racism. But most white people are much more careful about how they talk about black people.

Birmingham_campaign_water_hosesI recall as a white high school student living on welfare in a public housing project, the younger white people learned to speak differently of black people than some of their elders did. We were provoked by black people trying to assert their rights to use the same public facilities as white people in the South and the ugly response they received. For many of us, 1963 was when we learned to speak of black people differently.

Acceptable language of a fictional 1963 Review of lunch at Woolworths, Birmingham Alabama that soon became unacceptable.

 The Woolworths lunch counter gets consistently positive reviews, especially for its pleasant waitresses. However, a handful of Negroes complain about segregated seating and that they would be arrested if they sat in the white section. But why would they want to sit with white people anyway?

The locals point out that these complaints come mainly from outside agitators. Birmingham Negroes view the large colored section of the lunch counter as just as clean as the one reserved for white people. The same goes for the toilet for colored peoples except maybe for when the Negroes don’t clean up after themselves. Furthermore, outside agitators like the Southern Christian Leadership Conference have failed to attract many mature Negroes to their protests and are relying on high school, college, and even elementary school students, often recruited without their parents’ permission.

Why should we care about disrespect in the media directed towards people with chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME)? It’s too easy to think of many of these people (and healthy able-bodied persons get to talk to them as THESE people) as incurably sick people just cost the UK government money. Why, they are just a burden to themselves and to others. And the UK government has big problems ahead deciding how to deal with people with long-term medical conditions such as diabetes and dementia who are threatening to overwhelm the NHS. Hmm..

Martin_Niemöller_(1952)Pastor Martin Niemöller (1892–1984) warned us that we should all be concerned about a casual attitude toward hate and disrespect directed towards one vulnerable group eroding the respect accorded to others whom we think are immune to it.

First they disparage people with CFS and ME.

Trump mocking journalist

Then journalists with visible disabilities

Then homosexuals

homos curse with cancer

And then they went after the old, frail, and demented

 

demented

then thet came

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36 thoughts on “No Dissing! NHS Choices Behind the Headlines needs to repair relationship with its readers

  1. A very thought-provoking article, especially with the parallels between the aspersions historically cast upon various other minority groups. It’s horrifying that this sort of behavior is still acceptable from the media, researchers, and most especially the National Health Service.

    Regardless of who is right and wrong regarding the nature of ME/CFS (apparently the NHS reviewers can not comprehend the research involved), they should at least be fully committed to treating all patients with the utmost respect. Cheap digs like these just make the NHS look like petulant children who know they have lost the rational debate but can fall back on bullying to get their way.

    Liked by 4 people

  2. Thank you James Coyne for another insightful look at the PACE debacle and the way it has been framed in the media. Its good to see some light finally illuminating the shadier corners of this issue.

    If NIH Choices could not find anyone to critique the PACE findings they were certainly not looking very hard. The criticism of both the original trial and the follow-up have been plentiful in the last few weeks. Perhaps they should consult one of the highly respected scientists who signed this recent letter condemning the PACE trial:
    http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/
    With high-level expertise ranging from Epidemiology to Virology to Statistics etc I’m sure they could offer some perspective on what went wrong.

    Liked by 2 people

  3. This spiteful mockery of a whole disease-group of patients is shameful.

    What an utter lack of empathy or care for others.

    How does Gerard Blair still have his job with NHS Choices?

    Liked by 2 people

  4. Thank you for this. It’s disgusting that people are making jokes at our expense. Our community is full of people suffering so dreadfully. It simply isn’t funny. I despair at the fact that some people do send abusive emails rather than engaging dispassionately but we are as a community simply desperate and I can see why strong feeling spills over.
    It’s wonderful to have people speaking up on our behalf. The tide is turning!

    Like

  5. I’m shocked to see an NHS publication accept this disgusting disrespect of any patients. It doesn’t matter what I think of chronic fatigue, there is no excuse for a medical organization to condone this attitude. They wouldn’t consider it acceptable for Blair to be that rude about schizophrenia patients or HIV patients, why should it be acceptable to disrespect these people whatever we think of this illness?

    Thank you, James Coyne, for bringing the disrespect these patients are subjected to into the light. It has opened my eyes. There is something very wrong going on here. I want to know more. I will start doing my own information-gathering, but please Prof Coyne, keep writing about this topic. I’m sure I’m not the only one who is only just now learning about this shocking situation.

    Liked by 2 people

  6. Thankyou James for highlighting this awful so called health professional’s clear attack on chronically ill people, I will complain, also thanks for highlighting the clear bias of NHS Choices.

    Liked by 1 person

  7. It was people with M.E. that requested Behind The Headlines debunk the Daily Telegraph article the day it came out and although it was misguided in one aspect, I thought the majority of it was good. OK so Blair’s comments on Twitter after writing it were offensive but playing into the hands of people who like to smear us doesn’t help matters. We should remain dignified and not rise to it. I saw a tweet to him threatening to punch Blair if he ever met him, along with a load of other abuse. How does that help our reputation? I shouldn’t think NHS Choices will ever try to help us again. Why should they?

    Like

    • There were no results when I searched twitter for @gezblair and “punch”. Could you have been mistaken? Often when I look in to complaints about ME/CFS patients behaving badly, there has been some mistake. A lot of patients have been treated badly for a long time, so some occasional expression of anger would not be surprising, but the focus and attention some people want to give these things seems to reflect values that I do not particularly respect.

      Liked by 1 person

  8. Thank you for taking the time to explore the problems surrounding the attitude to ME patients in the UK and beyond. I became suddenly ill with ME, “a controversial illness” (as one work colleague called it) less than 4 years ago. I am horrified at the prevailing media rhetoric about ME patients. Thank you for standing up for us.

    Like

  9. Thank you for writing this. I’m used to being dismissed when I try to explain to representatives from the US government about biomedical aspects of my disease (abnormal SPECT scans, abnormal CPET scores, significant immune abnormalities, and persistent viral infections) – and I’ve learned that any sentence that begins with “You people …” is not going to have a happy ending. But I did find shocking the degree to which open mocking of patients is permitted by a reporter writing such a critical article on the disease for NHS Choices.

    Let me suggest that anyone doubting the severity of this disease – which impacts 250,000 adults in the UK and over one million in the US – have a good look at the website for the 25% ME Group, which focuses on the most severe patients – and then see how they feel about making jokes about sufferers and their families:

    http://www.25megroup.org/home.html

    Liked by 1 person

  10. Thank you for taking the time to point out that patients should be treated with respect and understanding. It’s a sad reflection on society that it’s necessary to point this out.

    As an ME/CFS patient, it’s surprisingly refreshing to see a high profile academic say that ME/CFS patients shouldn’t be mocked, and to see a non-patient calling out those doing the mocking.

    But I find it ridiculous that we’re in the situation where you have to point these things out and I find it refreshing!

    Thank you also for calling out the subtle messages within the NHS article. This is all too common within media articles about ME/CFS. Worryingly, these media messages (that seek to undermine the patient community) seem to come from the same sources. There seems to be a heavy bias in the media, in terms of where they are sourcing their commentaries.

    We expect more from the NHS. Controls and safeguards must be put in place to guard against and to remove biases.

    Unfortunately, it’s all too common for the ME/CFS patient community to be mocked, belittled, disparaged, slighted, and ignored. Even to the point whereby the only ‘treatments’ we are offered are wholly inappropriate, ineffective, and completely fail to understand the nature of the illness. Despite the whole community rejecting these ineffective treatments, NICE continue to promote them, and we are told that we are “against psychiatry” or other similar nonsensical accusations when we try to meaningfully engage with the medical establishment about the nature of the illness.

    Like

  11. Didn’t sleep well last night. When I woke up this morning the only things that didn’t hurt were my eyelids. I couldn’t think because my head felt empty. I just laid there without moving until I was able to pull myself together enough to get out of bed so I could take my medication. There is nothing psychological about not being able to move because your body hurts to the point that you wonder if death would be easier. The ME Association banned myself and several others from their Facebook page because we asked them to warn PWME that GET is dangerous to our health. The only harassment & death threats involved in this battle for proper health care are the Doctors who refuse to treat us and would rather see us die. “First do no harm” means nothing when it comes to Myalgic Encephalomyelitis, WHO ICD G93.3

    Like

  12. The situation that patients with ME/CFS are in is untenable in 2015.the amount of contempt, stigma and disrespect is at the highest level, both at a patients community level but also at a personal level.

    Thank you so much for taking a stand for good science, and against bullying. Because this is what it is. Once more.

    thank you.

    Like

  13. A very good article. When reading the piece in the box it is easy to forget the impression that is given and gloss over it because it is so commonly repeated.

    The big question that comes to mind is why is all the coverage like this. Those opposing PACE are often dismissed by journalists as people who don’t like psychological treatments rather than people who want good correctly and transparently reported science. I think what is significant is that journalists are taking their views from the PACE authors and the SMC who are providing PR for PACE. I don’t think many stop to talk to patients about their feelings or read the criticism.

    The ‘death threat’ and harassment story that have been used very effectively to stigmatize patients and devalue their criticism are also a much repeated narrative promoted by the SMC a few years ago. And still promoted by the PACE authors and people like Esther Crawely.

    So whilst we should expect journalists at a ‘trusted source’ in the NHS to see through this we should also look at who has created these stories and why.

    Liked by 2 people

    • Adrian said: “A very good article. When reading the piece in the box it is easy to forget the impression that is given and gloss over it because it is so commonly repeated.”

      We don’t become immune to such bias and mockery but we have become used to seeing this behaviour persistently repeated in the media. Our justified complaints in relation to bias and prejudice are inevitably ignored or dismissed. We get used to seeing both subtle and explicit derision. Seeing it in the general media is one thing, but seeing this sort of bias and prejudice within the NHS is exceptionally problematic.

      The language used in the NHS Choices article box is subtle but a corrosive and repeated ploy used to undermine the patient community. It suggests that patient representatives don’t have a legitimate opinion because they are unreasonable and biased. It’s a way to exclude patients and the patient community from any discussion about the treatments that are prescribed to them.

      The patient community wishes to engage in meaningful discussions with the media and the medical authorities about the illness; about what type of medical care is appropriate for their needs, and how treatments affect their lives.

      But the patient community is persistently excluded from any discussions about the nature of the medical care offered to them, by the technique of belittling and denigrating anyone who protests about the status quo. And this affects the medical care of individual patients.

      The patient community has a wealth of insight into the illness, and into what medical care and research are appropriate. And the patient community isn’t happy with the status quo. The current overall medical-care situation in the UK is considered to be neglectful at best and abusive at worst. Severely ill, bed ridden patients are left to fend for themselves because there are no medical services for severely ill ME/CFS patients. There is no treatment for ME/CFS whatsoever, but there is also no medical care available. No specialists ‘own’ the disease. No in-patient services. If you get a diagnosis then tough, your on your own to vote and to manage your illness and life, in many cases from your bed.

      No one knows what to do with these patients who can’t walk, so after being rejected by medical specialists (e.g. rheumatologist, neurologists etc) so without other resources, and in a state of bewilderment, family doctor sometimes refers the patients to psychiatrists who believe the illness is a behavioural disorder, because of their inappropriate training, and they implicitly blame the patient or their family for their situation. They put pressure on the patient to exercise, and blame the patients for getting themselves into such a state. Ask any patient and they will tell you how inappropriate exercise is for ME/CFS. It’s not only misguided, but it’s dangerous. The number of horror stories related to patients being told to exercise is starting. If clinicians had proper training, and were exposed to less prejudice, they would understand that ME/CFS is exacerbated by exertion, and that’s why patients employ an active management strategy known as pacing as a protective measure to avoid relapses.

      ME/CFS patients are vulnerable to profound relapses and deterioration, and physical exercise is a well known trigger. Psychiatry has somehow misunderstood this physiological reaction to exertion and had labelled it as deconditioning. This is an astounding case of a total disconnect from the reality of patients’ experiences. Instead of understanding that the relapses are caused by exertion, psychiatrists believe that the sudden and profound relapses are caused by sudden deconditioning. This is medieval medicine at its most perverse.

      This isn’t one or two patients creating a fuss about the status quo within the medical establishment. A whole community is speaking with a single voice, and needs to have its voice heard, but is dismissed and disparaged and mocked.

      Why and how has this situation come about? It’s particularly problematic in the UK. I can only guess that it’s because the NHS wants easy, low cost, answers, and isn’t interested in the complex realities of patients’ lives and the treatment that is required.

      Imagine if e.g. diabetes or Parkinson’s patients were told that they had a behavioural problem, and false illness beliefs, and were told to exercise their way to a recovery, and denied research funding, and biomedical investigations and treatments. It wouldn’t be considered acceptable. But this is what is happening to the ME/CFS patient community on a subtle but grand scale. And it’s overlooked because of the subtle but corrosive prejudice displayed in articles such as the NHS Choices article. The NHS article repeatedly states that cognitive-behavioural treatments have long term benefit, but the medical trial demonstrated that there was no benefit whatsoever. When the interventions were added to usual care, there was no change in health. What is the source of this bias in the NHS article?

      Many thanks to James Coyne for highlighting an issue that he shouldn’t have to.

      Liked by 2 people

  14. Thanks again for covering this topic.

    I think that anyone – whether a patient or not – who objects to Blair’s failure to properly assess PACE in his evidence summary, and who objects to the way he talks about patients – two separate issues, and we want two separate things done about them – should write a complaint to NHS Choices at

    complain@nhschoices.nhs.uk

    According to their website:

    NHS Choices complaint process
    In the event that a complaint is made about a piece of content that cannot be resolved by the NHS Choices journalist, the matter will be escalated to the Chief Editor.

    Note: NHS Choices is only responsible for the content of this website and any operational issues about it. If you wish to make a complaint about our content or any operational issues, please email complain@nhschoices.nhs.uk. Additionally you can take a look at the NHS Choices complaint process (PDF, 151kb) and for more detailed information see the NHS Choices complaints policy (PDF, 1.04Mb).

    http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/AboutNHScomplaints.aspx

    Liked by 2 people

  15. Gerard Blair accuses patients of being “blinkered” and closed-minded for allegedly “refusing” to consider looking into the “psychological aspects of the condition.”

    It is disingenuous in the extreme to pretend that, at this point in time, the idea that ME/CFS has “psychological aspects” is a convincing theory that needs to be explored further, rather than a theory that HAS been explored ad nauseam – without any convincing evidence emerging to support the theory, and with plenty of diverse evidence mounting up all the time to show that the disease is physiological in nature. Because it is not fully understood does not mean it is “unexplained” or somehow a result of patients’ mental attitudes. Sure, it has “psychological aspects” – in exactly the same degree that *any* highly disabling disease is emotionally very difficult to cope with…with the added hardship that patients are regarded with exasperation and contempt by doctors, public policy makers, and the general public.

    It’s not anti-science, or closed-minded, to observe that this psychological theory of disease causation is not actually supported by the science OR by patients’ personal experiences, which we have all been “vociferous” in describing to anyone who will listen. If you still want to cling to the idea that it’s useful to wonder whether psychological factors play “some role” in causing/perpetuating this particular disease – that’s fuzzy-minded at best, victim-blaming at worst.

    In fact, psychological theories of the disease have turned out to be worse than useless, because they have distorted the public discourse and perceptions of the disease so badly, and have had a profound chilling effect on the progress of the biomedical research that is so badly needed to advance our true understanding of the disease (or diseases). I think I have an idea of which side is looking more and more “blinkered” in this debate. Meanwhile, patients are denied equitable access to everything from proper medical care to disability benefits. It’s not melodrama to say that lives have been lost to this horrendous injustice – which is propped up by this ever-more-unconvincing “theory” that we’re not really “sick” in a physical sense. That’s not what science is supposed to do for the public that relies on it – and pays for it.

    Liked by 2 people

    • Well said, Sasha.

      A huge thanks to Prof Coyne for this and recent related articles on the appalling state of psychological ‘science’ for ME/CFS. Your work is helping a lot to get this disaster onto the radar and dealt with properly.

      Like

  16. Even though I’ve had M.E. for 25yrs, I object to you likening M.E . stigma to homophobia. I’ve never been beaten up for having M.E. but I have for being gay. It will make ME patients a laughing stock, as well as being highly insulting to gays, black people and other minority groups. Is it really appropriate? I’m not sure this method of raising awareness will get much sympathy with medics and the public. It’s inflammatory and just alienates us further, in addition to deepening the divide between patients and health organisations. Please be more considerate of the image of people with M.E. that you’re putting across.

    Like

    • Homophobia includes acts other than beating people up. Some people complained that homophobia should not be compared to racism, as there was not a history of slavery. These sorts of comparisons are never perfect fits. Those with ME/CFS do face real bigotry, and pointing to some of the similarities with past, and more widely understood, forms of bigotry seems only natural to me.

      Many of those with prejudices about ME/CFS will find having their views presented as a form of bigotry comparable to racism or homophobia to be inflammatory. It may make them less willing to listen. Similar things happened when homophobia started being more widely compared to racism. I think that this is something which will need to be gone through before people with ME/CFS start being treated fairly.

      Liked by 2 people

    • I think comparing prejudiced attitudes towards the ME/CFS patient community with prejudice towards the gay community is entirely appropriate and accurate.

      I’ve read about both gay people and disabled people who have been physically abused in the street.

      But this blog does not pretend that being gay and being disabled are the same, or that gay and disabled people encounter exactly the same problems in their lives.

      The blog highlights the issue of prejudice and points out that it is no more acceptable to discriminate against a person with ME/CFS than it is to discriminate against other groups of people.

      As we have seen in many media articles, the prejudice against ME/CFS runs deep in our society, and the effects of this discrimination has a direct impact on patients’ live.

      If a patient group is disparaged, mocked, and disempowered then it can have a corrosive effect.

      If the popular media portrays patients as lazy, or as not really being ill, or as having false illness beliefs, as all too often happens, then this attitude rubs off on the public, and it can consciously or unconsciously affect the attitudes of health care providers.

      It can and does affect health care, it can and does affect claims for social security, it can and does affect social care and it can and does affect the attitude of friends and family.

      Discrimination can be subtle, and it can be blatant. and many patients find that it runs throughout the healthcare system. If a patient is lucky enough to have avoided such discrimination then I’m pleased for them, but many patient experience it.

      Liked by 3 people

      • I’m sorry but I still think it’s highly inappropriate. As a health professional myself, I know that this sort of thing won’t suddenly make health pros sympathetic to our cause, it will just reinforce what some already think of us – attention-seeking and melodramatic (not saying I think that obviously). I feel the same way about the HIV/AIDS comparison. There are better ways of raising awareness. We don’t need to make comparisons like this. We should just give the facts and let them speak for themselves, as they are convincing enough when I give talks. I’m hoping none of my colleagues and health pros and health organisations I’ve been training about M.E. hear of this as I’m afraid it would undo a lot of work. I’ll just keep on with what I’m doing as I’m getting results by acting in a way that commands respect rather than ridicule.

        Incidentally, it was people with M.E. that asked NHS Behind the Headlines to do their piece, in response to the Daily Telegraph front page article with the headline “Exercise and positivity cures M.E.”. It wasn’t part of a big nasty conspiracy theory against us. They didn’t have to do it. Of course they had to stick to the NICE guidelines, being part of the NHS. Incidentally, the NICE guidelines weren’t based on PACE because they were written before PACE existed. Hence, the guidelines won’t be rewritten if PACE is retracted. The only thing which will make that happen is a big bio study with a large number of participants. That would change attitudes to M.E. overnight, whereas retractions of any sort never reach and undo the damage the original causes. There are over 4,000 chronic medical conditions and there are only 280 of these that have a disease-modifying treatment. I’m not saying that’s OK but we’re not being singled out and need to be careful how we come across to the public with all this.

        Like

      • Emily said: “I know that this sort of thing won’t suddenly make health pros sympathetic to our cause, it will just reinforce what some already think of us – attention-seeking and melodramatic (not saying I think that obviously).”

        So you agree with James that there is stigma and prejudice attached to ME/CFS, but you disagree with how to do about challenging it.

        Obviously ignorance is the root of all prejudice, so misinformation such as that contained within the NHS Choices article is unhelpful. I see it as legitimate to challenge the misinformation.

        You are claiming that you know how (all?) health professionals will react to this blog. I do not accept that anyone has a monopoly of wisdom when it comes to advocacy, campaigning, or attempting to highlight issues and change minds.

        Emily said: “Incidentally, it was people with M.E. that asked NHS Behind the Headlines to do their piece, in response to the Daily Telegraph front page article with the headline “Exercise and positivity cures M.E.”. It wasn’t part of a big nasty conspiracy theory against us. They didn’t have to do it.”

        I expect that patients thought that the NHS would present unbiased and accurate information based on the outcomes of the study, rather than present misleading and inaccurate spin.

        The NHS Choices article suggests that CBT and GET were beneficial at long-term follow-up, whereas the data indicate that they had no clinical benefit. i.e. there was was no difference between trial arms, and no difference when CBT or GET were added to usual care.

        So CBT and GET were completely ineffective but were presented as being of clinical benefit at follow up. There may not be a “big nasty conspiracy” involved, but all the media is misrepresenting the trial data, and the spin seems to have come from the same source.

        Liked by 1 person

      • No, I didn’t say I know how *all* health professionals would react. I just don’t think it’s helpful to burn bridges with organisations that we’ll have to work with to gain what we need for people with ME in the UK. Each to their own, in terms of awareness methods, but I’m as entitled to express an opinion as the next person. There’s room for all of us to raise awareness within our own specialisms so I will continue to do that. Thanks for the information.

        Like

  17. Thank you so much for beginning to address this issue. It has long been at the heart of the decades of ignorance and neglect for ME patients worldwide. I have long been shouting into the wind that medical bigotry is still bigotry no matter how you dissect it.

    Have you noticed how certain players keep referring to ME patients’ efforts to have a voice in the conversation as “The ME lobby” (among other nasty things, but this seemingly innocuous one suddenly hit me today.) “The ME Lobby”–as if it were a collective of annoying fringe lunatics whose specific purpose was to annoy, not to raise awareness and acquire much-needed and long-overdue appropriate research funding.

    ME is only just beginning to *have a lobby, though it’s not even a proper lobby yet. In fact, it’s incomprehensible that disease entities need to have government lobbyists in the first place, but so it is.

    How do “The BPS Lobby” live with themselves referring to desperately ill people in a derogatory way by deprecating their very attempts to organise for help that is not forthcoming?
    Can you imagine anyone saying “The Breast Cancer Lobby” or “The AIDS lobby” in a pejorative sense? They’d be publicly pilloried for such prejudice.

    I’ve said it before and I’ll say it again, *medical bigotry is still bigotry*, and I think it is yet another subject that needs some major journalistic outing.
    It is at the core of a shamefully protracted struggle, and I’m so glad to see it brought to light here. Thank you Dr. Coyne, as always.

    Like

  18. I welcome James Coyne’s highlighting of the appalling way in which people with ME have been treated by sections of the UK media. Gez Blair is only one of many who have thoughtlessly and unkindly contributed to the narrative that people with ME aren’t really worthy of any kind of compassion or respect. We are scoundrels and blinkered ingrates! How dare we reject these ludicrous behavioural therapies, or exercise therapies that can harm us…I have been ill with Ramsay-ME since 1982 and I can say confidently that the perception of ME as a serious illness has been damaged hugely by the UK psychiatric lobby.

    Like

  19. Thank you James for your hugely perceptive blog. Spot on. You demonstrate a strong moral compass which NHS Choices have failed with in their article.

    On 25 November 2015, I wrote to NHS Choices:
    ‘I am writing to complain about the article Exercise and Therapy “Useful For Chronic Fatigue Syndrome” NHS Choices 28/10/15 which misinforms by failing to point out that the data in the study showed a NULL result.

    The article also implies those who criticise the flawed methodology of the PACE studies are pursuing a controversial agenda to close down research of a psychiatric nature with regard to this biological illness. This is a false assertion and I believe is misleading and discriminatory by setting CFS Patients apart as ‘different’. Patients with CFS across the UK most certainly do accept Psychiatric help, just as people with other organic illnesses do. It also implies misleadingly that people with CFS, unlike others, do not deserve to have the human right to self determination and autonomy when deciding which treatments to accept and which to refuse. A right which is enshrined in the NICE guidelines for CFS.

    It is not controversial for scientific colleagues or informed others to point out methodological flaws in a study, or for patients to exercise their right to treatment choice. Scholarly criticism is essential in the search for truth.

    I respectfully ask you to remove this flawed article and issue a public apology. I would also be grateful if you could say whether NHS Choices were aware of Gerard Blair’s contempt (as evidenced by his tweets) for patients with CFS when his article was accepted for publication.’

    Am awaiting their response.

    Liked by 2 people

  20. I’m too ill at present to think coherently, type much, or add usefully to the comments above, so will just add my very sincere thanks to you, James Coyne, for another hugely incisive and necessary blog. Please keep them coming!

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  21. My initial complaint about the NHS Choices article was considered but dismissed, so I asked for the complaint to be escalated to the next level, as per the NHS Choices complaints guidelines. Below is the subsequent response that I received (with names redacted). I will now ask to escalate the complaint to the next level.

    ————————————————————————————————————

    Dear xxxxxxxxxx

    Thank you for your email. I understand your concerns. I have reviewed the article with my Head of Production and we remain confident that it does not breach our editorial policy. In view of your concerns, we have asked our independent scientific analysis experts at Bazian to review the piece, and they have confirmed they remain content with the published material.

    The outcomes of studies or clinical trials are not assessed by NHS Choices’ own staff. Instead, the editors at NHS Choices decide, on a range of criteria, which news articles to cover and then locate the scientific papers on which the stories are based. The papers are passed to Bazian, who are specialists in the field of evidence-based scientific analysis; it is they who carry out the actual critique and provide a report to us.

    The editor edits the material provided to ensure it is, as far as possible, in plain English and is appropriately formatted for publishing. The edited content is re-checked by Bazian prior to publication to ensure no inadvertent errors or bias have been introduced. Our process is designed to minimise the scope for individual bias to influence the outcome and we consider that this article reflects an impartial analysis of the scientific paper concerned.

    I appreciate the reasons for your concern, and acknowledge your request for the article to be removed from our site; however I cannot recommend this action as there has been no breach of editorial policy.

    Kind regards

    xxxxx xxxxxxx
    Director, Data and Information
    NHS Choices.

    ————————————————————————————————————

    Like

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