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

[Wonko]

They're dispensable ....

In that case I'd be happy to see them dispensed <no further words or clarification are required, and would possibly breach good taste if added>

 

[charles shepherd]

Following my email to Tom Feilden (Science Editor at BBC) i was contacted by the producer on BBC R4 Today
I have been offered a slot on 'Today' at 6.50am tomorrow mining (Friday)

This cannot be guaranteed - depends on news agenda in the morning

Also trying sort out logistics of either doing this in the BBC satellite van in the wilds of the Cotswolds at 6.50am or going to Bristol or Glos at 5,45am

BBC R4 news will not do telephone interviews

Early night for me…

CS

 

[Barry53]

This article seems a bit better ...

http://www.netdoctor.co.uk/healthy-...ightning-process-me-chronic-fatigue-syndrome/

The Lightning Process: Does this controversial (and expensive) chronic fatigue syndrome treatment really help patients?
...

Many experts have dismissed the claims as placebo at best – and damaging to children at worst. The ME Association in particular has spoken out robustly about the LP and campaigned against the new trial since first learning of the launch of its pilot in 2010.

The Advertising Standards Authority has upheld complaints related to the claims made by the treatment. And the Trading Standards departments of two local authorities have also taken action over claims made by LP practitioners.
...

But as Crawley herself has admitted there are a lot of limitations with this study. It's impossible to know right now if the Lightning Process would work on its own, for instance.

"I'm not advocating people go out and get the Lightning Process. And we don't know if it works for adults and we don't know if it works for primary school-age children."

 

[user9876]

Following my email to Tom Feilden (Science Editor at BBC) i was contacted by the producer on BBC R4 Today
I have been offered a slot on 'Today' at 6.50am tomorrow mining (Friday)

This cannot be guaranteed - depends on news agenda in the morning

Also trying sort out logistics of either doing this in the BBC satellite van in the wilds of the Cotswolds at 6.50am or going to Bristol or Glos at 5,45am

BBC R4 news will not do telephone interviews

Early night for me…

CS

Having such an early start is not equal prominence for a correction of inaccuracies.

 

[Wonko]

I dispute whether it's impossible to know if brainwashing people to believe they are not ill can cure a physical illness.

 

[Barry53]

An interesting thread on LP at Thyroid UK ...

https://healthunlocked.com/thyroiduk/posts/136324243/bad-science-misled-millions-with-chronic-fatigue-syndrome.-here’s-how-we-fought-back...?responses

I've read quite a lot on the Phoenix Rising forum, and they are many times worse off than most people with thyroid difficulties. They get no treatment at all. Once you've been diagnosed with ME/CFS you are effectively denied treatment for everything. This is done on the basis that doctors think people with the condition are shirkers, malingerers, attention-seekers, people who want to be ill etc and the sufferers are classed as mentally ill.

I find this all very odd. People with bipolar disorder or schizophrenia or psychosis or loads of other conditions are described as mentally ill, but doctors don't deny them treatment as a result, and don't hate the patients.

Yesterday the results of a trial called the SMILE trial were announced. It got a mention on the BBC and on various online news sites.

bbc.co.uk/news/health-41336384

It involved treating adolescents with ME/CFS with a "treatment" called the Lightning Process (LP). It turns out that the Lightning Process is basically based on magic, brainwashing, coercion and making the kids tell themselves lies and tell other people lies. You must never tell people you have ME for example, and you must always say you feel well, no matter how bad you feel. And it is riddled with patient-blaming too.

I got this quote from the PR forum :

The Lightning Process is:

Believe the Lightning Process will cure you.

Tell everyone you are cured.

Stand on paper circles with some key words written on them.

Learn to say a rhyme when you feel symptoms, no matter where you are, and as many times as it takes to make the symptoms just go away!

Speak in positive words and think with positive thoughts only.

Shout "Stop!" at every symptom.

You are responsible and choose to have M.E. - you must choose a life you love.

If the process is not working, you are not doing it right.



And the worrying thing for us on this forum is that LP is proclaimed to be a good treatment for hypothyroidism and hyperthyroidism and many other conditions that often occur along with thyroid problems.

People using the Lightning Process® have also recovered from, or experienced significant improvement with the following conditions: –



Fibromyalgia

Chronic Fatigue Syndrome

Post Viral Fatigue

Asthma

Rheumatoid Arthritis

Hayfever

Depression

Dyspraxia

Bipolar Disorder

Ocd

Anxiety And Panic Attacks

Insomnia

Cerebral Palsy

Low Self Esteem

Parkinsons Tremors

Motor Neurone Disease

Hyper And Hypo Thyroidism

Chronic Aches And Pains

Ibs

Lyme Disease

Anger Issues

Food Intolerances

Coeliac Disease

Ptsd

Candida

Allergies

Type 2 Diabetes

Interstitial Cystitis

Migraines

Noise And Light Sensitivity

And Many More



Using the Lightning Process® has proven effective for clearing ALL the debilitating physical and mind based symptoms of ME, chronic fatigue syndrome, and post viral syndrome.



Some of the symptoms that people have cleared are listed here…



Addictions, adrenal problems, allergies and intolerances, anxiety, balance problems, bloating, blurry vision, brain fog, candida, chemical sensitivity, compulsive behaviours, concentration problems, confusion, constipation, depression, diarrhoea, dizziness, electrical pulsing sensations, excessive sleeping, exhaustion, fatigue, fear, feeling detached or disconnected, fever and chills, flu-like symptoms, frequent coughs and colds, fybromyalgia, hallucinations, head pain or pressure, heartburn, indigestion, insomnia and other sleep disturbances, irritability, irritable bowel syndrome, itching and rashes, itchy eyes, joint pain, light sensitivity, loss of vision, malaise, memory loss, migraines, muscle pain, nausea, noise sensitivity, oedema, panic attacks, painful and/or swollen glands, pins and needles, restless leg syndrome, runny nose, sensitivity to electrical fields/computers/mobiles etc, shaking, shooting pains, skin sensitivity, stomach pain, sun burn sensation, swelling, temperature control problems, thrush, thyroid problems, unrefreshing sleep, vertigo and similar sensations, vomiting, water retention, watering eyes, weakness…"

 

[Barry53]

Following my email to Tom Feilden (Science Editor at BBC) i was contacted by the producer on BBC R4 Today
I have been offered a slot on 'Today' at 6.50am tomorrow mining (Friday)

This cannot be guaranteed - depends on news agenda in the morning

Also trying sort out logistics of either doing this in the BBC satellite van in the wilds of the Cotswolds at 6.50am or going to Bristol or Glos at 5,45am

BBC R4 news will not do telephone interviews

Early night for me…

CS

I'll tune in.

 

[Barry53]

Just heard on the TV (Have I got More News for You) that apparently lying is easier on a full bladder! (Wish I was a cartoonist ).

 

[Wonko]

Just heard on the TV (Have I got More News for You) that apparently lying is easier on a full bladder! (Wish I was a cartoonist ).

So if we want to get to the truth we should ensure these people don't drink, at all, for how long? A month seems good to me.

 

[Invisible Woman]

.

Just heard on the TV (Have I got More News for You) that apparently lying is easier on a full bladder! (Wish I was a cartoonist ).

Are you taking the p***?

 

[Barry53]

http://www.bris.ac.uk/news/2017/september/lightning-process.html

Many children and families in our service did not want to have LP and therefore, this approach is not for everybody so we must continue to investigate other treatment approaches."

Which suggests her study will have also incurred some very significant selection bias presumably.

 

[Barry53]

.

Are you taking the p***?

Have I got More News for You is a very satirical show, so it was definitely in that vein. But usually based on some news item or other ... and we all know about the veracity of news stories.

 

[MeSci]

Just heard on the TV (Have I got More News for You) that apparently lying is easier on a full bladder! (Wish I was a cartoonist ).

I think I've heard this (or similar) before. I suspect that if it is true at all, it's only for men. (Maybe those with intact/healthy prostates?).

 

[charles shepherd]

Following my letter to Tom Feilden (Science Editor at BBC R4) yesterday the MEA was given a right of reply on BBC R4 Today at 6.50am this morning (Friday)

I had to get up at 5am this morning to go to the BBC studio in Glos at just before 6am!

As it's BBC R4 Today they would not do this on the phone and the BBC satellite van that normally comes to my home address here in the wilds of the Cotswolds wasn't available this morning

I was also told that I would have the (approx) 10 minutes slot before the 7am news but was then informed that I would only have about 3 or 4 minutes to get my points across!

I had a very difficult conversation with a senior producer on Today last night - who had clearly swallowed the message that we were being pretty horrible in opposing a clinical trial which had demonstrated that the LP could help to get kids with ME better and back to school

And I think Stephanie Saunders was going to go down that route as well - which is why I decided to just push on and say what I wanted to say before being chopped at 6.55

Time for breakfast…

CS

 

[charles shepherd]

And for people who haven't seen it this is PP taking about the SMILE trial:

 

[NelliePledge]

Following my letter to Tom Feilden (Science Editor at BBC R4) yesterday the MEA was given a right of reply on BBC R4 Today at 6.50am this morning (Friday)

I had to get up at 5am this morning to go to the BBC studio in Glos at just before 6am!

As it's BBC R4 Today they would not do this on the phone and the BBC satellite van that normally comes to my home address here in the wilds of the Cotswolds wasn't available this morning

I was also told that I would have the (approx) 10 minutes slot before the 7am news but was then informed that I would only have about 3 or 4 minutes to get my points across!

I had a very difficult conversation with a senior producer on Today last night - who had clearly swallowed the message that we were being pretty horrible in opposing a clinical trial which had demonstrated that the LP could help to get kids with ME better and back to school

And I think Stephanie Saunders was going to go down that route as well - which is why I decided to just push on and say what I wanted to say before being chopped at 6.55

Time for breakfast…

CS

Good that you actually did get a bit of time but they have really messed you about @charles shepherd. Is the senior producer really saying that the ME Association view should be censored/given minimal air time because on the limited second hand information available to them they disagree with it???? That is unacceptable. Are you considering another complaint? Also you probably wont answer this but have you raised it with E Crawley- after all she was the one who actually made the statement?

 

[chipmunk1]

 

[Hilary]

And for people who haven't seen it this is PP taking about the SMILE trial:

THEY JUST DONT GET IT!!!!
Several times Phil Parker refers to "chronic fatigue and ME" in the same breath. He also says at the end (I paraphrase I think) that there were no adverse events resulting from the trial. Quod erat demonstrandum or something like that. If you have genuine, neurological ME and you do as instructed on an LP course, in my experience you are likely/ very likely/ inevitably going to suffer a relapse.
So it seems to me that either none of the participants had ME at all, or they are keeping quiet, not daring to contradict the positive line they've been told to stick to (and if they don't it's their fault anyway).

 

[slysaint]

@charles shepherd s bit on Radio 4 this morning:


http://www.bbc.co.uk/programmes/b093hwkl
starts 0:51:20

 

[TiredSam]

@Charles shepherds bit on Radio 4 this morning:
http://www.bbc.co.uk/programmes/b093hwkl
starts 0:51:20

Thanks for that @charles shepherd. I was a little alarmed to hear that "the trial should have been done on adults with three arms", but otherwise excellent. You did an excellent job of not letting Stephanie Saunders butt in with any stupid questions or comments.