ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

[NelliePledge]

And yes, there are things happening away from the public domain in relation to what has happened over the past 48 hours……but I am not going into details here

 

[Barry53]

Communication isn't helped when you have a very short time and and aggressive interviewer. Really the interviewer should be helping make sure peoples points are understandable rather then showing their personal biases.

And indeed not just personal bias I suspect, but BBC partly line bias, ingrained via SMC and "peer pressure".

 

[BurnA]

The next point that I was really hoping to bring in before the chop came from Stephanie was the fact that this could well be a placebo response - as was pointed out by the Prof from UCL in the SMC expert comments

Thanks Charles that's good news.

Just picking up on the placebo response, I don't want to divert the discussion into placebos but the Prof from the SMC said "this could be due to placebo which would still be GOOD news."


I am pretty sure this is not good news, in fact a subjective / percieved placebo response to a form of brainwashing is definitly not good news.

I would have thought it unusual for there not to be a placbo response, but this has no bearing on good news or otherwise.

Suggesting that a placebo response is "Good news" is devoid of any logical thought here.

 

[Wonko]

Suggesting that a placebo response is "Good news" is devoid of any logical thought here.

I suspect that may be relative to your point of view.

If, for instance, you can use a brainwash caused placebo response to keep someone in work and off benefits, until they drop dead, due to the fact they were still ill and have in fact worked themselves to death, from the point of view of the government budget, this is good news.

If you can further convince them they are well to the extent that they never use NHS resources, that again, from a budget perspective is good news, good news created by the placebo effect.

Not that I'm suggesting anybody commenting would think that, I'm just musing about how the terms good news, placebo effect and M.E. could be meaningfully conjoined from the perspective of those in "authority".

Obviously I'm way off the mark and this isn't the reason.

 

[Yogi]

And yes, there are things happening away from the public domain in relation to what has happened over the past 48 hours……but I am not going into details here

CS

We shall see what comes from this.

I am not holding my breath.

TO Everyone on PR: I would not get our hopes up. I have heard these guarded comments about something up the MEAs medical advisor sleeve so many time only to be let down like a damp squib. The hope is that the furore would go away next week as we are ill and focus on something else.

Remember MEA allows this behaviour of Esther Crawley as they collaborate with her and could stop it. Never forget that point that both CS and EC are in the same tent.

 

[TiredSam]

BTW the interviewer was Stephanie Flanders not Saunders.

Pam

Really? That's very disappointing, I thought much more highly of her.

 

[charles shepherd]

We shall see what comes from this.

I am not holding my breath.

TO Everyone on PR: I would not get our hopes up. I have heard these guarded comments about something up the MEAs medical advisor sleeve so many time only to be let down like a damp squib. The hope is that the furore would go away next week as we are ill and focus on something else.

Remember MEA allows this behaviour of Esther Crawley as they collaborate with her and could stop it. Never forget that point that both CS and EC are in the same tent.

Have you not noticed what the MEA has been doing this week in relation to the SMILE trial - both in public and in private (which will remain private)

We have not collaborated with the SMILE trial - we opposed it right at the start and made our ethical concerns known to the Ethical Committee at the time. We/I have no power to stop someone carrying out a clinical trial - even though we do not agree with it.

Which other ME/CFS charity has been contacting the press, sending out press releases which are very critical of the trial, and doing radio interviews on the subject this week?

 

[Orla]

We shall see what comes from this.

I am not holding my breath.

TO Everyone on PR: I would not get our hopes up. I have heard these guarded comments about something up the MEAs medical advisor sleeve so many time only to be let down like a damp squib. The hope is that the furore would go away next week as we are ill and focus on something else.

Remember MEA allows this behaviour of Esther Crawley as they collaborate with her and could stop it. Never forget that point that both CS and EC are in the same tent.

I think this is victim blaming. Crawley behaves the way that she wants and gets away with it because the establishment lets her. If the establishment stepped up we wouldn't be in that situation.

 

[Yogi]

Have you not noticed what the MEA has been doing this week in relation to the SMILE trial - both in public and in private (which will remain private)

We have not collaborated with the SMILE trial - we opposed it right at the start and made our ethical concerns known to the Ethical Committee at the time. We/I have no power to stop someone carrying out a clinical trial - even though we do not agree with it.

Which other ME/CFS charity has been contacting the press, sending out press releases which are very critical of the trial, and doing radio interviews on the subject this week?

But you give EC the ME communities approval by colluding with her on CMRC and MEGA. This sanctions her to behave this way.

No other charity colludes with EC (except AFME who are a lost cause and a BPS front).

I am surprised the MEA trustees allow the MEA to be in bed with the abuser Esther Crawley. You will really damage the MEA reputation.

Stop appeasing her.

You also have not responded about what discussions you had with Stephen Holgate over abuse presentation and unauthorised use of young kids photos. What happened then?

http://forums.phoenixrising.me/inde...anti-science-brs2017.51066/page-3#post-842717

Enough said.

 

[Snow Leopard]

The next point that I was really hoping to bring in before the chop came from Stephanie was the fact that this could well be a placebo response - as was pointed out by the Prof from UCL in the SMC expert comments

There are many biases that lead to changes in questionnaire answering behaviour that isn't limited to the placebo response. (most people believe the placebo response are real improvements in health, hence you won't win any arguements stating it's just placebo)

Otherwise I agree, it's a shame how little the media wishes to listen to your side - they're siding with quackery over science.

 

[Kati]

Thank you @charles shepherd. I did not hear the interview but it sounds like you did a great job. Thank you for your work in and out the public scene, with the hope that your work will come to frutition.

 

[Valentijn]

I'd think the brainwashing aspect is the bigger problem, especially with LP, and one which is easier for the public to understand. There are serious ethical issues with any treatment where a child is told that the key to being cured lies in denying that they have symptoms - to themselves, and to others. It becomes especially problematic in the context of a trial, where the efficacy of the treatment is judged by the children reporting their symptoms following the brainwashing.

 

[chipmunk1]

I suspect that may be relative to your point of view.

If, for instance, you can use a brainwash caused placebo response to keep someone in work and off benefits, until they drop dead, due to the fact they were still ill and have in fact worked themselves to death, from the point of view of the government budget, this is good news.

Good point. Who said that the placebo effect isn't helpful?

The next trial we will see will be the PLACEBO trial.

 

[user9876]

Just picking up on the placebo response, I don't want to divert the discussion into placebos but the Prof from the SMC said "this could be due to placebo which would still be GOOD news."


I am pretty sure this is not good news, in fact a subjective / percieved placebo response to a form of brainwashing is definitly not good news.

Some people believe in the placebo effect as a real effect that has curative properties as opposed to a set of reporting biases that promote subjective results. Unless a definite method is found sounds to me like a belief in magic.

 

[Barry53]

All serious biomedical illnesses can cause accompanying depression, anxiety etc. (not the other way around!) in some people, inevitably exacerbating the problem. A placebo effect may well help alleviate these secondary issues, but of course not the underlying physical illness. It is quite feasible that some of the young people had mild ME (or were misdiagnosed with ME), but the angst of it all maybe brought on significant secondary symptoms, at a time in their young lives when growing up is hard enough as it is. It doesn't take much for some young people to find school a pretty devastating experience, especially when hampered with an illness that makes it harder (maybe very much harder) for them to "fit in", and even more especially with an illness their peers (and probably their teachers) don't see as an illness at all, but likely misinterpret as "just" being unsociable, lazy etc. I bet some of them still get told in class "Wake up at the back there!"

So I suspect that any modest improvement in school attendance, is simply youngsters learning a coping strategy, in this case learning to cope with school life, and all the additional problems it throws at them. They will then inevitably be feeling better than before - but they will still have ME, unless it has run its course anyway, as it does sometimes with young people.

Interpreting any modest improvement in school attendance, as evidence of reduced ME severity, would be a real leap of blind faith!

 

[arewenearlythereyet]

I suspect a lot of children used in the study had depression not ME. I think the FT quote above had an article underneath saying that one in four 14 year old girls have depression. We have a belief in the UK that children don't get depression. Whilst 1 in 4 seems quite high, I would suggest that it is probably higher than 1 % and so gives rich pickings for studies like these. I suspect that EC knows full well how to spot the depressed cases and so selection for this trial may have had a bearing on the result.

 

[Snow Leopard]

I suspect a lot of children used in the study had depression not ME. I think the FT quote above had an article underneath saying that one in four 14 year old girls have depression. We have a belief in the UK that children don't get depression. Whilst 1 in 4 seems quite high, I would suggest that it is probably higher than 1 % and so gives rich pickings for studies like these. I suspect that EC knows full well how to spot the depressed cases and so selection for this trial may have had a bearing on the result.

Can we please stop with the "just had depression" comparisons. LP won't magically work for depression either.

The problem is that self reports are easily biased and can show the type of improvement in this trial even if there is no underlying change in illness or behaviour. (especially if the whole point of the therapy is brainwashing you so you tell people you're much better)

 

[arewenearlythereyet]

Can we please stop with the "just had depression" comparisons. LP won't magically work for depression either.

The problem is that self reports are easily biased and can show the type of improvement in this trial even if there is no underlying change in illness or behaviour. (especially if the whole point of the therapy is brainwashing you so you tell people you're much better)

I think the point I was trying to make (obviously badly) was that depression cases may have been easier to achieve a positive long term outcome and be more responsive to one to one counselling or even group therapy. Of course self reporting bias has an effect?

Perhaps it's worth considering that there may be multiple variables at play rather than just one reason?

 

[Cinders66]

Just further info on the background of tom fielden, radio 4 science edidtor for newcomers
He's right in there with SMC and was the main journalist to break the harassment story in 2012 or whenever. Very cringy article here in SMCs own literature with Esther Crawley deciding she is a victim. Unfortunately this narrative is lapped up in uk which holds distaste for patient activism, the dr is always right and good and connecting us with animal rights activists was a final nail in the complete warping of the real story. Here is the literature

The SMC are not our friends so why are they in the CMRC.

http://www.sciencemediacentre.org/w...ews-from-the-front-line-essays-on-the-SMC.pdf

"We discussed whether someone at the top of one of the leading charities might be behind much of it, relying on others with a lower pro le to take the abusive actions. We were told that we needed to make better use of the law and consider using the press in our favour - as had researchers harried by animal rights extremists. “Let the public know what you are trying to do and what is happening to you,” we were told. “Let the public decide.”

.....
The SMC suggested that we talk to the BBC’s science reporter Tom Feilden. It is hard to trust again when you’ve been hurt, but the SMC was insistent that he was one
“of the best”. They would trust him with anything, they said. He was a fair and responsible reporter. Tom visited for about an hour, listened to the research we were doing and recorded an interview. The piece was broadcast on the Today programme, and the response was unbelievable."

Tom himself writes
"The original idea for the story came from my editor, Ceri Thomas. At an SMC meeting he’d heard something about doctors being targeted at conferences and on the internet, and thought it might be worth looking into. I contacted the Centre. It was clear
from the reaction to my call that we had a big story."

So the SMC successfully made the abuse story the dominant CFS narrative in uk. One can only wonder who and which charity they were talking about.

 

[chipmunk1]

LP does not treat the body/change reality. It attempts to change the perception of a person. People can be brainwashed to believe anything if they want to be brainwashed.

If people want to believe in LP they will find it effective or at least report it to be effective.

The reality and this includes the body will not be changed by it.

https://en.wikipedia.org/wiki/Émile_Coué

Thanks to his method, which Coué once called his "trick",[21] patients of all sorts would come to visit him. The list of ailments included kidney problems, diabetes, memory loss, stammering, weakness, atrophy and all sorts of physical and mental illnesses.[citation needed] According to one of his journal entries (1916), he apparently cured a patient of a uterus prolapse as well as "violent pains in the head" (migraine).[22]

C. (Cyrus) Harry Brooks (1890–1951), author of various books on Coué, claimed the success rate of his method was around 93%.[citation needed] The remaining 7% of people would include those who were too skeptical of Coué's approach and those who refused to recognize it.[citation needed]

) "The method’s central "magical incantation" — a specific formula, uttered a specific number of times, in a special way, using a knotted string — aroused strong opposition, as it reeked of outmoded superstitious practices and beliefs.

While most American reporters of his day seemed dazzled by Coué's accomplishments,[23][24][25] and did not question the results attributed to his method,[26]), a handful of journalists and a few educators were skeptical. After Coué had left Boston, the Boston Herald waited six months, revisited the patients he had "cured", and found most had initially felt better but soon returned to whatever ailments they previously had.