Telegraph Tomorrow - Exercise and positivity can overcome ME

[charles shepherd]

PACE TRIAL ACTION POINTS FROM THE MEA: WEDNESDAY 28 OCTOBER

Although I was up till nearly 1am this morning pushing out the MEA press release on the new PACE trail paper to various contacts and dealing with comments on various social media outlets, I have not been able to get involved with the follow up during the day as I have been travelling to and from an important research meeting that could not be postponed, and only got home at 9pm

Before leaving Glos early this morning I was contacted by BBC Radio 5 Live to take part in two of their programmes during the day that were covering the story - both of which could not be followed through due to clashes with travelling arrangements

I did however pre-record a six minute interview for the BBC which I understand is being used on various local radio stations:

BBC Norfolk version is here: http://www.bbc.co.uk/programmes/p034hs9t

There is quite a long segment on ME/CFS which is conducted by a good interviewer, Nick Conrad, starting after about 1.20 minutes of the morning programme

Comments from myself and the MEA have also been published in a number of newspapers - including the Daily Mail and Guardian:
http://www.theguardian.com/society/...cise-oxford-university-study-exercise-cbt-cfs

I will be spending much of tomorrow (Thursday) dealing with this new research paper and the media reaction to it

I will be sending a formal complaint to the Daily Telegraph regarding their factually inaccurate and potentially harmful headline to their news item and asking for an equally prominent correction:

Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise'
Oxford University has found ME is not actually a chronic illness

I will also be sending an 'intended for publication' reply to the DT

Fiinally, I am very concerned about the way in which adverse, inaccurate and very upsetting coverage of ME/CFS has once again followed on from a press briefing at the Science Media Centre.

I will be raising this at the next meeting of the Board of the UK Research Collaborative.

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Yogi]

What a busy day.
Thank you Dr Shepherd for all you do.

 

[SOC]

Here is the main results graph from the Lancet article:

Interesting that the GET group is the only one in which patients DID NOT report improvement in physical functioning between weeks 52 and 134. This suggests that GET may have inhibited the small improvement that appears to be the natural progress of the disease. (Note: I do have serious questions about whether there was real improvement in physical functioning or just a change in how patients report. When you've been sick long enough, you get used to disability and may not be able to accurately compare to healthy anymore. This is why objective measures are needed.)

Also interesting is that while fatigue scores dropped in all arms between weeks 52 and 134, they dropped less in the GET arm. Again, consistent with our understanding that forced exercise interferes with our health rather than improves it.

GET and CBT had the shallowest slopes in the long-term which suggests that they are not beneficial relative to APT and SMC.

I'd love to see some objective data taken on these patients now to evaluate their current physical functioning. Are there actual differences in current physical functioning among the arms, or is it that different groups have been trained to answer questionnaires differently?

And it should go without saying that I'd also like to have those patients diagnosed by ME/CFS specialists who actually know how to do diagnosis using the CCC and the ICC so we know which patients had/have chronic fatigue and which had ME/CFS.

 

[Snow Leopard]

Since when is CBT called 'positivity' anyway?

Since it was first reported by a journalist.

 

[SOC]

The Telegraph editors won't be very happy if Sharpe fed them a pack of half-truths and is now slagging them off for writing untruths.

One could almost feel sorry for them, since they are probably innocently parroting what they've been fed, thinking it's all God's truth. They'll soon find themselves face down in the mud crying, "WTF! We were only trying to help!" ...except they are supposed to be responsible journalists and check up on the info they're fed instead of just regurgitating it without thought. So there goes my sympathy. You swim with the sharks, you get bitten.

 

[SB_1108]

Imagine the power that must give you, to dominate others lives this much, simply by words and lies. Their ego's are enhanced and their arrogance reaches new territories. One of the elite troll, trolling in the press knowing, that no one dare complain, no one dare go on video and tell the potential millions around the digital world how they feel (e.g. on YouTube) and if they did, most people would laugh at the victim. It takes an incredible mind to accept rejection by 99% when 1% accepts you.

I'm sure like others, I keep my multi decade diagnosis secret. I tell no one, such is the shame in reveal. Even on here, when I type I feel deeply embarrassed, I don't feel worthy of an opinion, and afterwards I feel guilty and worry.

Well said @Research 1st!!

I have been thinking all day about the absurdity of this entire situation! I can't even believe that we are going through this again, I thought we were past this point. I want to sign on to my Facebook and make a post to my "friends" that everyone needs to sign the petition to retract the PACE trial BUT... I can't. I've been sick for 6 years and I still don't have the courage to be vocal about my disease. I know friends/acquaintances think I'm faking it. I have already lost too many people from my life and the shame and judgement that will follow from that post are too much for me. I don't want people to know that Oxford University even said that GET/CBT was a treatment because I know my "friends" would doubt the legitimacy of my diagnosis (even more than they already do).

I feel like I have to be my own advocate and raise awareness for ME/CFS but I'm too embarrassed. How do we balance that?

 

[SOC]

The pièce de résistance of a long day - Yougov's daily live poll is "Is ME a real illness?", Don't worry, I didn't let the side down.

https://yougov.co.uk

We are winning but it seems rather beside the point.

What the heck is this... an opinion poll about the reality of a disease? Seriously? As if opinion matters in medical diagnosis? What is this YouGov thing and what does it have to do with Gov?

 

[alex3619]

Part of the tactic used by them is to feed the prejudices of others and to smear patients in subtle ways while giving some superficial appearance of professionality.

Or as I keep saying, they use political rhetoric to argue, not scientific argument.

 

[alex3619]

Where does misrepresentation end and fraud, or malfaecance, since it was paid with public funds, begin? How is that distinction made and by whom?

I believe there is a good argument to be made that this is deliberately deceptive conduct. I think that is grounds for a claim of scientific fraud. However this requires meticulous analysis, which I was starting to do for a book I was writing on all this, but then my brain slid off the cliff and its still falling. So its all on hold. Others could do this though if their cognition was good and they had a strong grasp of logical fallacies and how to spot persuasive but misleading rhetoric.

 

[Roy S]

Whats a sub?

Sorry, I don't know.

 

[alex3619]

Either Sharpe would have to comment directly on the claims in the paper and say how they do not represent whats in the study or he would have to dig a deeper hole.

I think he would just decline to comment.

 

[SOC]

Whats a sub?

Sub editor? The implication being, "Don't blame the author for the headline, some dumbshit sub editor skimmed the article and constructed an attention-getting headline. Common practice. No big deal. Not the fault of the author. Nothing to see here. Move along."

 

[alex3619]

(ME has been 'real' since 1969).

ME has always been real. Reality is not about when something is acknowledged as real. It just is. In any case if you are referring to the first ICD code, that is NOT real. ICD codes do not validate an illness. Never have. When many doctors hear such claims they probably turn off. ICD codes are just bureaucratic reporting codes. They have some small political value, but that is it.

 

[Yogi]

Whats a sub?

Sub editor

Which makes the matter even more serious. Weasly is just trying to make sure that no-one can be held responsible.

http://www.prospects.ac.uk/press_sub_editor_job_description.htm

 

[alex3619]

They have done nothing to rebut the false headlines.

As they didn't with the media response from the original paper.

 

[alex3619]

except they are supposed to be responsible journalists and check up on the info they're fed instead of just regurgitating it without thought. So there goes my sympathy.

Didn't most journalists stop doing that? They have to do twice as much in half the time now with all the cutbacks. Check facts? Who has time? They would risk getting fired.

 

[alex3619]

I'm sure like others, I keep my multi decade diagnosis secret. I tell no one, such is the shame in reveal. Even on here, when I type I feel deeply embarrassed, I don't feel worthy of an opinion, and afterwards I feel guilty and worry.

I am probably different because I was diagnosed in 89 and always public. What I feel is righteous anger at people's attitudes. I am however wary about expressing that sometimes if I am trying to get things done and it would get in the way.

 

[SOC]

Didn't most journalists stop doing that? They have to do twice as much in half the time now with all the cutbacks. Check facts? Who has time? They would risk getting fired.

Oh yeah, silly me. It's too hard to be responsible and ethical and do your job correctly. Who has time for junk like integrity and honesty?

I'm going to remember that the next time I design a bridge. Who has time for safety calculations? Let's just throw that baby up there and hope she stands.

Sheesh.

 

[meadowlark]

Whats a sub?

I have a migraine, so I can't write intelligently about most of this today, but I am a journalist, and have friends who are "subs" in England. (Not at the Telegraph.) In that country, the sub is a sub-editor. He writes the headline and the deck. e.g. LITTLE RED RIDING HOOD IS SAVED would be a headline in heavy type, and underneath it would be the deck, in smaller type -- something like "heroic woodsman comes to child's rescue." The actual story of Red Riding Hood would be the article beneath.

Sub-editors fact-check common facts (like the spelling of cities, a statement that a certain mountain is the tallest in the world, that sort of thing), cut the article to fit the space allowed, and write the head and deck. They would not check something for scientific accuracy, as they're not qualified, and they're also not qualified to judge the way the writer interprets a study or statistics.

If the headline written by the sub-editor doesn't fit the article, the handling editor of the article is responsible. After all, he/she read the piece before giving it to the sub to work on, and should notice when it exaggerates or misrepresents what is in the text.

The writer may or may not see the headline before it's published. He may be sent a pdf of the article before it's printed if there's something the editors want to run past him. Very often, though, the journalist reads the headline when the public does.

In the end, a slanted or unfair head or deck may have been written by the sub, but the responsibility lies at the editor's door.

And of course, in this case, there's a lot to lay at the writer's door as well.

 

[Riley]

There's an MEaction petition regarding all of this:

http://my.meaction.net/petitions/pace-trial-needs-review-now