Time to be Heard

Six weeks on from the infamously unhelpful article by Sarah Knapton in the Daily Telegraph, the online version of the newspaper has published an article on ME by Dr Charles Shepherd of the ME Association with a view to correcting some of the misinformation. This was part of a deal which was struck by way of redress for the Telegraph falling so short of the truth on this occasion, as part of which they also published a ‘clarification’ of their assertion that ME isn’t really a chronic illness. As the clarification stated that the study they had reported actually said no such thing, it might have been more appropriate to call it  a ‘correction’ but I suppose you can’t expect a leading national newspaper to have such a precise grasp of the English language.

As for Dr Shepherd’s article, it doesn’t appear in the print edition, this in marked contrast to Knapton’s article which was linked from the front page. We have elderly relatives who read the original article but will only receive Shepherd’s piece because we’ll print it out and send them it. Many other Telegraph readers will sadly remain in ignorance.

This sort of imbalance is pretty much standard, of course, in situations like this, and Dr Shepherd and the ME Association are to be congratulated for at least getting the deal they did. It is worth, too, saying a word or two extra in praise of Charles Shepherd, who has been performing duties like this on our behalf for the best part of three decades now, plodding time and again to the barricades to call out the truth into the no man’s land of ignorance, doubt and incomprehension, then plodding patiently back again in the knowledge that he will probably have to do the same thing all over again in an another week’s time. And another. And another. The man is a hero. We are very fortunate to have him.

We are also lucky to have ME patients such as Tom Kindlon who have been plugging away with well reasoned comments for years, slowly exposing the fracture lines in the PACE Trial and counteracting other misconceptions. Not all of us are capable of such exhaustive feats of analysis, and yet there is a growing understanding that we all have a part to play in getting the truth out there.

As I mentioned in my previous post, the high volume of quality comments which flooded into the Telegraph after the Sarah Knapton article led to a much more helpful piece from James Le Fanu appearing the following week. And only a few days ago, the US National Institutes of Health removed a PACE-related article promoting CBT and GET  from their Medline web site following representations from patients.

This was a perfectly logical correction for NIH to make, as their P2P report had already found that the Oxford diagnostic criteria (used by PACE) were flawed and should be retired. However, with all matters pertaining to ME, it always comes as a pleasant surprise when logic is actually followed.

In both these cases, the sheer volume of comments received appears to have had an impact. This suggests that the more of us who make our views known when it matters the better, and it’s worth considering how we can best achieve this.

‘How to Comment on Online News Stories’, a post on the Phoenix Rising site, has some useful advice to give. ‘If it’s a good article, thank the journalist’ is one point it makes which hadn’t even occurred to me, yet it’s obvious when you think about it. There’s usually more incentive to get in touch when the article is a bad one but it’s just as important to comment when it’s good. That way, the journalist might be encouraged to write more of the same.

Other advice includes sticking to key points, keeping it short, and ‘not ranting’. That last point is pretty much a no brainer. Thanks to the tireless efforts of Sir Simon Wessely in presenting himself as a victim, there is a widespread misconception that people with ME who speak up about our condition are an ‘irrational’ bunch who are prone to making ‘death threats’. So losing our temper or rudeness are totally counter-productive. Whatever point we are trying to make will then be lost as the story gets turned around to be all about us and how awful we are. This misconception is nonsense of course – as I discussed in my previous post – but it seems to have stuck, so the last thing we need to do is to reinforce it.

It seems to me that accuracy is also important. With so much nonsense talked about our condition, it’s important that we ourselves stick to the facts. There’s a wealth of information to be accessed through social media, yet my experience is that it’s there one minute but when you want to refer to it, you suddenly find it’s buried under what appears to be several decades of timeline.

Possibly with this in mind, #MEAction, an international group founded just a few months ago by Jennifer Brea and others, primarily to provide support for ME/CFS advocates, is working to produce a range of accessible information. Their fact sheet ‘Why ME Patients are Critical of the PACE Trial’ is already semi-finalised and available to members. An ME Wikipedia is planned. It was #MEAction who organised the petition calling for the retraction of the unfounded PACE claims which I mentioned in my previous post – please consider signing it if you have not already done so – and initiated the successful NIH campaign I mentioned above. Please take a look at their web site to see what else they have to offer. This is a great initiative and membership is free.

To do my own bit, I’m hoping to dig through that timeline of mine and retrieve some helpful quotes that people can use when representing our case. If I do, I’ll post a list of them here. If there’s any quotes or vital facts you think should be included, please feel free to leave them in the comments.

Finally, I’d like to draw your attention to a brilliant blog post by Tanya Marlow which appeared on the Spectator site a few weeks ago (in response to an appalling piece about ME which appeared there by Rod Liddle). Tanya’s post is a remarkable example of concise, hard-hitting writing, bringing home the stark reality of ME and providing a host of invaluable links in the process: an ideal piece to shock those who doubt the reality of our condition out of their disbelief.

This is exactly the sort of message we have to get out there. For the truth is that far from being ‘irrational’, we have a story to tell which is solidly rooted in fact: in our experience of the condition and in the solid research which is now being done. We are the voice of reason. It is time for us to be heard.

The Truth about ME

“ME/CFS is a serious, chronic, complex, systemic disease that can profoundly affect the lives of patients.” US Institutes of Medicine Report

“ME/CFS is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.” Dr Daniel Peterson

“Unfortunately ME/CFS is an area where the research and health care community has frustrated its constituents, by failing to properly assess and treat the disease and by allowing patients to be stigmatized.” US NIH Pathways to Prevention Report.

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4 thoughts on “Time to be Heard

  1. That was a really effective article, Tanya. I read it originally in your blog. It’s great that it was taken up by The Spectator. I was wondering if you saw the tweet about writing something from a patient perspective for the BMJ? I think you would be an ideal person to do it if you are able, though I know this is a busy time of year. We’ll forward you the tweet in case you didn’t see it. Glad you found this article helpful. Yes, there is a lot of encouraging stuff going on at present. Things seem to be heading in the right direction – albeit slowly.

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  2. Excellent article well written and yes Thank You to Charles S & Tom as well as Lady Marr for all the amazing work she and her team do and all the volunteers at Invest in ME…….we have all the foundations to build we just need the support and it’s coming slowly 😊

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  3. Many thanks for your comment. Yes, I think we are slowly making progress and we have some good people helping us. As regards PACE, the latest refusal to share the data and the unconvincing excuses they’ve given are starting to bring in concerned academics who haven’t previously heard of PACE. That is a very good sign.

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