"You and yours" BBC phone in on "chronic fatigue" -26 sept

[Large Donner]

Crawley actually says during this interview that the point of GET is to get people to exercise less and not more but then gets all confused and says that exercise decreases inflammation and that's the point of GET.

Its so tiring hearing the word exercise used instead of exertion within a ceiling limit and within the lost capacity of the body to heal itself and replace cells. Exercise is what healthy people do on top of all of the activities of daily living. Surely with her logic LP is a cure for old age and we could all live for ever if we could just find enough pieces of paper to stand on.

With ME or MS or MND there is a ceiling level of exertion that people can achieve that's the whole point. They cant exert to the general levels of a person of similar age who is healthy. This is what is so infuriating about the simplicity of GET and what anyone wants to claim it is on any given day.

Also Crawly goes down the line of the mind body connection and how we shouldn't be separating physical and psychological, in which case why do we bother with treatments for MS or cancer when we could just stand on pieces of paper shouting stop at the symptoms.

 

[Chrisb]

I thought the tiredness was obvious until we got to the advocate for LP.

 

[NelliePledge]

I thought the tiredness was obvious until we got to the advocate for LP.

she's tiresome

 

[TiredSam]

okayyyyy.

At this point I'd like to disclose that I have never eaten any type of broad beans, when I was 7 they tried to get me to eat them, without success - disgusting things.

Apparently this means I don't have M.E., which is good news.

So now the problem is, what do I have? Am I deficient something that is only found in broad beans perhaps

You do have M.E. - and you have just discovered the childhood trauma that led to it . Now all you have to do is get along to a therapist and you'll be sorted.

 

[wastwater]

Quote:Can you hear the tiredness in the callers voice.
I like the way they managed to also get features of a quiz into the programme
What was 1st prize a week of lightning therapy

 

[ladycatlover]

.......................It is an allergy to broad beans.

Had broad beans for lunch today. I really like them. We just planted a load of seeds too, ready to plant at lotty when (if) they start to grow. I've only been eating them the last few years though, when I first got sick I'd never eaten them so far as I can recall.

 

[Londinium]

What struck me again is, despite finding this amazing new treatment that is even more amazing than the already amazing exercise therapies, how coy again its proponent was at actually describing the form and content of the therapy. Almost like there's a sense of embarrassment about magic circles and whatnot.

Confirms again that the most effective approach, IMHO, is whenever phrases like 'brain training' are used to describe LP there is an opening for ME patients to highlight what this 'brain training' actually comprises, the fact that people 'cured' by it may now have been invited to deliver it, plus the history of its author. (Kudos to the person I saw on Twitter who found that Mr Parker had previously advised using Tarot cards to diagnose medical conditions).




That all said, LP aside, it was not a bad show and definitely got across the views of ME patients about the ineffectiveness of the current NICE guidance, the risk of misdiagnosis, and the fact that the NHS fails patients time after time.

 

[Countrygirl]

I notice nobody is mentioning the urine drinking part of the miracle cure

Ah!

I have been given two bits of advice by my GPs in the 35 of 40 years I have lived in this area with ME. (The other five were spent in Avon and a nursing home, where I received excellent care, but no real treatment apart from threats of mistletoe injections)

(1) After 35 years, my GP sent me an advert through the post.

It was an advert for a mattress. He said if I bought one I would no longer have ME. I didn't oblige and he struck me off his list after he told me he didn't believe in symptoms he couldn't see.

(2) My previous doctor advised me to .............drink my own urine. After I recoiled at the thought he told me he would never ask a patient to do something he hadn't tried and he did so every morning, no doubt instead of orange juice.

I was so tempted to send this to You and Yours but didn't have the nerve.

 

[Yogi]

Haven't listened to it as haven't signed up to the BBC online service.

Someone used to record these and put them up on youtube. That would be good to have on record.

 

[Wonko]

Doctors can be wackos too, there is even a chance it's more likely than with your average bod, there's also a chance it's not, but that's no fun

 

[Large Donner]

Not only has she cracked the mystery, but...............even better..........she has the cure. And, no, it isn't avoiding broad beans (she wasn't fazed by the fact that I don't like them and always avoid them.................makes no difference.................)

Drink your own urine.................

................................

I bet Esther Crawley and Phil didn't realise that they have stumbled on the cure for broad bean allergy.

They dont need to drink their own piss they are too busy swallowing their own shit.

 

[Mrs Sowester]

Wow @Countrygirl my jaw is on the floor.
You're on the wrong side of the Tamar, I've not actually had any meaningful help over here, but at least they call it ME and take it seriously.

 

[wastwater]

Mistletoe injections is that a really bad euphemism,I wouldn't go anywhere near that

 

[Countrygirl]

[QUOTE="Londinium, post: 911810, member: 30368" (Kudos to the person I saw on Twitter who found that Mr Parker had previously advised using Tarot cards to diagnose medical conditions).

.[/QUOTE]

And don't forget his claimed ability to pass (his spirit, I assume) into the body of the patient in order to diagnose them.

I wonder if he has taught this technique to Esther? Will he teach it to the GPs?.

It would add a certain je ne sais quoi to future appointments.

All on the NHS.

 

[Mrs Sowester]

Mistletoe injections is that a really bad euphemism,I wouldn't go anywhere near that

Just googled that, latest sham treatment for cancer it seems? It'll be interesting to see if it overtakes sticking cannabis up where the sun doesn't shine in the magical cancer cure popularity polls.

 

[Countrygirl]

Mistletoe injections is that a really bad euphemism,I wouldn't go anywhere near that

No! Afraid not.

When I was in the nursing home, mistletoe injections were all the rage.

I shared a room with another ME patient and she had her injection one day before mine was due.

Shortly after she had it, I found her unconscious on our bathroom floor.

I phoned a friend and asked him to get me out of there asap.

 

[MEMum]

Interesting info from the Linbury Trust

MEDICAL:
For around 10 years, commencing in the early 1990s, Linbury funded more than 40 research projects into various aspects of CFS / ME (Chronic Fatigue Syndrome / Myalgic Encephalomyelitis). This pioneering programme of sustained support led to great strides in the acceptance and understanding of this condition by both the medical establishment and general public.

More info: http://www.linburytrust.org.uk/

 

[Countrygirl]

Just googled that, latest sham treatment for cancer it seems? It'll be interesting to see if it overtakes sticking cannabis up where the sun doesn't shine in the magical cancer cure popularity polls.

Ah!! So that is where I went wrong.

I tried taking it by mouth. Didn't do a thing.

I know where to put it next time.

A heavily tattooed man accosted me near my house recently. Frightened me half to death. Then he said, 'Hello Miss!' Don't you remember me?'

'''''er.......no......but when I last saw him he was sweet sixteen and now is nearly 50.

He explained how he had been given a 20 year prison sentence for smuggling heroin and supplying.

(So many of my past pupils have been/ are in prison..................murder, drugs, GBH, robbery.............hope it wasn't my influence................. )

Anyway, he noticed I wasn't on the top of my bounce

....................................and told me he intends to supply his old school teacher with 'something' through her letter box.........

...............................not sure about the ethics of that.........

................but perhaps if it does appear I don't take it by mouth this time.....................is that right? (I, unlike my pupils, have lead a sheltered life and don't know about these things. )

 

[SilverbladeTE]

Personally, I'd love to take all these psychobabblers, LP quacks, chain them to the oars of a galley and shout:
"RIGHT! Caesar's going water skiing, and YOU'RE getting some exercise!"

 

[Mrs Sowester]

Apparently sticking it up yer bum is all the rage in the medical cannabis underworld @Countrygirl. There are special medicinal weed varieties for such an application, or so I was informed by someone who seemed to know an awful lot about it.
I hope nodded politely as I walked away backwards.