Telegraph Tomorrow - Exercise and positivity can overcome ME

[TiredSam]

Sarah Knapton seems to have a talent for this kind of article. Here is today's effort:

http://www.independent.ie/life/heal...cceptable-to-touch-other-people-34146258.html

The biggest study ever conducted into physical contact

Sounds impressive until you read that it's based on sending pictures to 1300 people in 5 countries and asking them to colour them in. These 5 different nationalities are then aggregated as "people" and many inferences drawn. Kissing v. handshaking is discussed. Hugging is not even mentioned.

It is "Oxford research". Does Oxford University not have some kind of reputation to maintain?

However there were some unexpected findings, such as men would rather be touched on their genitals by a casual female acquaintance than by their own mother.

Words fail me.

 

[Scarecrow]

Words fail me.

I wonder if that was a surprise to her or to the researchers?
Either way, I think most of the rest of the word may confidently have predicted it.

 

[Countrygirl]

However there were some unexpected findings, such as men would rather be touched on their genitals by a casual female acquaintance than by their own mother.

Words fail me

I'm just going out for a short stroll. I'll put it to the test.............in the interests of science, of course.

If this happens to be my last post, you know the science is suspect.

 

[charles shepherd]

There went my tea all over my keyboard. Yeah, I'd say that's a "winner".

I think the stupid pic may actually be covered by the Irish Press Council Code of Practice.

MEA has written to the paper about the article and sent another letter regarding factual inaccuracies and the happy smiling weight lifter.

If no correction appears I will ask the IPC to adjudicate.

MEA letter:

Re: Coverage of ME/CFS research in Irish Independent on Friday 30 October:
http://www.independent.ie/life/heal...-positive-thinking-and-exercise-34148290.html

I have already sent an 'intended for publication' letter to you in response to this news item earlier today

However, it is factually inaccurate to state in the main heading that:

Oxford University has found ME is not actually a chronic illness



No such conclusion from 'Oxford University' was reported in the research paper, or the press release from the research group, or by anyone involved in the PACE trial from Oxford University

This is an important and prominent factual inaccuracy that requires an equally prominent correction/retraction in line with the Press Council of Ireland Code of Practice

Principle 1 − Truth and Accuracy
1.1 In reporting news and information, print and online news media shall strive at all times for truth and accuracy.
1.2 When a significant inaccuracy, misleading statement or distorted report or picture has been published, it shall be corrected promptly and with due prominence.
1.3 When appropriate, a retraction, apology, clarification, explanation or response shall be published promptly and with due prominence.



So please could you let me know what action you will be taking.

I would also point out that the other heading to this news item:

Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise'

along with the very inappropriate photograph of a lady doing weight lifting is misleading, insensitive and offensive to the thousands of well motivated people who are doing their very best to manage a complex long term illness that is classified by the World Health Organisation (in ICD10, G93:3) as a neurological (not psychiatric) disease.

It really is about time that the press produced some balanced reporting on what is happening to research in ME/CFS, such as the report in the Guardian:
http://www.theguardian.com/society/...cise-oxford-university-study-exercise-cbt-cfs

and the important research findings that were presented at the recent UK Research Collaborative conference:
http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/

Yours sincerely

Dr Charles ShepherdHon Medical Adviser, ME Association
Website: www.meassociation.org.uk

 

[Bob]

After its shocking abuse the Telegraph publishes something much better, written by a patient...

This was in yesterday's newspaper, in the feature section rather than the main news section...

The harsh reality of living with ME
Nathalie Wright
31 OCTOBER 2015
http://www.telegraph.co.uk/wellbeing/health-advice/me-and-me/

 

[Sidereal]

After its shocking abuse the Telegraph publishes something much better, written by a patient...

This was in yesterday's newspaper, in the feature section rather than the main news section...

The harsh reality of living with ME
Nathalie Wright
31 OCTOBER 2015
http://www.telegraph.co.uk/wellbeing/health-advice/me-and-me/

Wow, great article. Thanks Nathalie!

 

[TiredSam]

Perfect. More articles like that in the mass media please.

 

[Large Donner]

What would be very interesting would be to find out how many positive/accurate stories on ME as opposed to how many dreadful ones, like the Sarah Knapton one, come about as a consequence of something the BPS school has just released and the source being the SMC.

 

[harveythecat]

Wow, great article. Thanks Nathalie!

Thanks guys - guess I'm 'revealing' myself here - but I wrote that article. I'm extremely fortunate to know a reporter at the Telegraph. When I saw the earlier headline, I burst into tears. I text my friend and he asked me to write an article. I really pushed for a more scientific angle/ basically I wanted to tear the PACE trial apart, but was pushed more in the 'personal story' direction. I fought long and hard about the 'What is ME?' sidebar and managed to get them to make it reasonably okay in the end I think.

 

[Snow Leopard]

After its shocking abuse the Telegraph publishes something much better, written by a patient...

This was in yesterday's newspaper, in the feature section rather than the main news section...

The harsh reality of living with ME
Nathalie Wright
31 OCTOBER 2015
http://www.telegraph.co.uk/wellbeing/health-advice/me-and-me/

Excellent article. If only they went with this and skipped the other article altogether.

 

[Sean]

"As so often happens with poorly understood illnesses, attempts were made to psychologise my ME. I reluctantly saw a hospital psychologist, who seemed determined to find a cause in my immediate environment. After 40 minutes of desperate floundering, it seemed he’d hit the jackpot.

“Where did you go to school?” he asked.

Huddersfield, I told him. Nodding sagely and narrowing his eyes, he asked “Are you having a hard time with the posh boys at Oxford?” That was all the NHS had to offer me."

 

[searcher]

Thanks guys - guess I'm 'revealing' myself here - but I wrote that article. I'm extremely fortunate to know a reporter at the Telegraph. When I saw the earlier headline, I burst into tears. I text my friend and he asked me to write an article. I really pushed for a more scientific angle/ basically I wanted to tear the PACE trial apart, but was pushed more in the 'personal story' direction. I fought long and hard about the 'What is ME?' sidebar and managed to get them to make it reasonably okay in the end I think.

You did an amazing job! I was really impressed by how you combined good criticism of PACE with your personal story. I hope that Sarah Knapton read your article and thought twice about what she wrote.

 

[Sasha]

Thanks guys - guess I'm 'revealing' myself here - but I wrote that article. I'm extremely fortunate to know a reporter at the Telegraph. When I saw the earlier headline, I burst into tears. I text my friend and he asked me to write an article. I really pushed for a more scientific angle/ basically I wanted to tear the PACE trial apart, but was pushed more in the 'personal story' direction. I fought long and hard about the 'What is ME?' sidebar and managed to get them to make it reasonably okay in the end I think.

It's absolutely superb - thanks so much for writing it. Very shaming for Pemberton if people read both - and I think a lot more people are going to read a feature than Pemberton's ugly rantings.

 

[Effi]

Thanks guys - guess I'm 'revealing' myself here - but I wrote that article. I'm extremely fortunate to know a reporter at the Telegraph. When I saw the earlier headline, I burst into tears. I text my friend and he asked me to write an article. I really pushed for a more scientific angle/ basically I wanted to tear the PACE trial apart, but was pushed more in the 'personal story' direction. I fought long and hard about the 'What is ME?' sidebar and managed to get them to make it reasonably okay in the end I think.

thank you @harveythecat for writing this excellent article! This kind of 'personal story' is what many (healthy) people would read and would be touched by, rather than an article about the technical flaws of a scientific study. A touching story usually leads to more understanding, which we sorely need. Also, good job on pushing for the 'What is ME?' sidebar! I remember many articles with links leading to seasonal depression and ridiculous things like that...

 

[Bob]

Thanks guys - guess I'm 'revealing' myself here - but I wrote that article. I'm extremely fortunate to know a reporter at the Telegraph. When I saw the earlier headline, I burst into tears. I text my friend and he asked me to write an article. I really pushed for a more scientific angle/ basically I wanted to tear the PACE trial apart, but was pushed more in the 'personal story' direction. I fought long and hard about the 'What is ME?' sidebar and managed to get them to make it reasonably okay in the end I think.

You wrote an amazing article. Thanks so much. My parents read it in the actual paper and said it had a full page spread.

 

[slysaint]

Excellent article. I'm glad you stuck with using ME rather than CFS that most GPS in the UK seem to prefer.

 

[Yogi]

I cannot keep up with all the developments over the last week and suffering from PEM and was going to write this last night and therefore it is good to see you on the forum. So much to catch up on this week.

Thank you very much @harveythecat for speaking out. It is very brave to come out publicly and especially given the latest PACE results to come out were also from Oxford University. Well done your article was excellent !

 

[Roy S]

https://mobile.twitter.com/JoanMcParland/status/661350854822395904?p=v

 

[TiredSam]

I saw a friend of mine this evening, a retired professor of neurology who knows I have ME, didn't know anything about it before I had it, has been interested and supportive. This evening he says "Did you see there was an article in the Telegraph last week ...". I was interested in what a non-ME person would make of it, so asked him what he thought. He said he thought the comments were very agressive. I asked him what he thought of the article. He said it seemed like a perfectly normal factual article, about the latest research, saying that ME patients should get up and do something and they'd feel better.

So that's the impression the article and comments made on a well-educated reader who doesn't know much about ME (sample size of 1). I started explaining about the PACE trial, but stopped fairly quickly when I realised that to him I was probably starting to sound like one of those militant activist types. I didn't want to spoil everyone's evening by being the ME patient at the table, so changed the subject.

 

[Scarecrow]

I saw a friend of mine this evening,
-

I didn't want to spoil everyone's evening by being the ME patient at the table, so changed the subject.

I know the feeling.