Mirror: ME sufferer spent seven years in bed but she's now conquered the highest mountain in Britain for charity

[Andy]

Saw this shared by the ME Association on Facebook...

Eventually, after seven years in bed, Emma’s mum heard about an unusual Indian treatment called NAET (Nambudripad’s Allergy Elimination Techniques) which treats allergies and intolerances through acupuncture. By this point, Emma had almost given up hope of getting better, but thought there could be nothing to lose from trying this alternative therapy.

NAET involves having acupuncture while small amounts of trigger foods are placed on the body. Although initially sceptical, Emma began to regain a little energy each day. She became well enough to sit up in a wheelchair and was able at long last to appreciate seeing the outside world again. After six months, Emma was able to eat more, and with proper nutrition, her body began to grow stronger.

https://www.mirror.co.uk/news/real-life-stories/sufferer-spent-seven-years-bed-12952123

 

[Trish]

A quote from the article:

Life for ME sufferers these days is a world away from when Emma was at her sickest. Doctors now understand much more about how the illness works, and treatment is much more readily available.

While of course I'm pleased that Emma's health has improved, and hope it continues to do so, this article gives such a false message.

The people who do the weird sounding therapy will rake in a lot of money from this.

 

[Esther12]

Great to hear she's doing so much better, and really good that she's still trying to help raise money to help others, but Nambudripad’s Allergy Elimination Techniques does look like utter quackery. I guess there's still a chance that advice founded on quackery could have led to her excluding something that she did respond poorly to for some reason? Or it could be that she would have improved anyway.

 

[Sly Saint]

Saw this shared by the ME Association on Facebook

I'm guessing that was because she was raising money for them, but this is the sort of thing I would expect from AfME not the MEA particularly in the current climate with the NICE guidelines etc.

As it says she virtually lived on Weetabix and custard I am not surprised that she improved once her diet was improved...........

 

[TiredSam]

As it says she virtually lived on Weetabix and custard

When I read that I thought that was what cured her and was looking forward to trying the Weetabix and custard diet to see if it did anything for me. Love custard.

NAET involves having acupuncture while small amounts of trigger foods are placed on the body.

Well if someone can get away with marketing that pile of horseshit I reckon I stand a chance with my new cure - TSCT*

She was obviously very ill and I'm glad she's better, but I don't think this kind of article helps the cause, although it might result in a spate of inquiries to Mr or Ms Nambudripad. Although ME was described in much better terms than what was usual until the recent past - "debilitating neurological illness" and not a look in from the BPS brigade, apart from a mention of patronising doctors who treated her as a hypochondriac. So even the crap articles with a cure to sell are getting better these days.

I'm tempted to write to the Science Media Centre for their expert reaction to Nambudripad’s Allergy Elimination Techniques, but on second thoughts best not - once they get wind of it they'll be lobbying the MRC to fund an expensive trial for Esther.

Can't help noticing the name of the writer - Rosie Hopegood. With a name like that she was destined to write inspiring stories of triumph over adversity and miraculous cures ...

*TiredSam's Custard Therapie - Custard made with the trademark recipe can be applied orally, transdermally by bathing, or in pie form (hence the spelling of "Therapie" - my marketing department have been working overtime).

 

[Barry]

One day, when the science is understood, I would not be surprised if a subset of PwME have their problem rooted in allergies and food intolerances. My wife might well belong to such a subset. It is also possible that some strategies stumble upon something that works, even if the purported reasoning is flawed.

Edit: Although Emma's condition came on slowly, whereas my wife's, along with many others I think, was very rapid onset.

 

[NelliePledge]

*TiredSam's Custard Therapie - Custard made with the trademark recipe can be applied orally, transdermally by bathing, or in pie form (hence the spelling of "Therapie" - my marketing department have been working overtime).

there'll be folks all over the country calling for this on the NHS especially for children and perhaps there'll be a trial funded by some private trust - the 'RUBARB' trial

 

[Amw66]

One day, when the science is understood, I would not be surprised if a subset of PwME have their problem rooted in allergies and food intolerances. My wife might well belong to such a subset. It is also possible that some strategies stumble upon something that works, even if the purported reasoning is flawed.

Edit: Although Emma's condition came on slowly, whereas my wife's, along with many others I think, was very rapid onset.

It reminded me of peanut allergy being treated via peanut loaded probiotics - dose starts low and works up as person is gradually desensitised.i think this was in Australia and was devised for children
It' s not the substance itself but the dose .
For people with many allergies/ intolerances something like this may make a difference.

 

[Little Bluestem]

Nambudripad’s Allergy Elimination Techniques sounds like a treatment for allergies not ME.

I am proposing LBPT - Little Bluestem's Pie Therapy. You eat any type of pie you want, custard, rhubarb custard, or whatever. It may not cure your ME, but at least it will make you (fat and) happy.

 

[arewenearlythereyet]

I suggest that the custard therapy is enhanced by taking unblanched sticks or rhubarb and getting the therapist to use these to gently massage the patient if progress isn’t made with custard alone.

If lack of progress persists, the therapist can slowly increase the frequency and intensity of the rhubarb smacking. The oxalic acid in the rhubarb gently draws out toxins and aids lymphatic drainage, so depending upon severity of symptoms more than one session may be needed.

Recovery can be realised by a simple questionnaire at the beginning and end of the sessions.

 

[TiredSam]

Recovery can be realised by a simple questionnaire at the beginning and end of the sessions.

Genius - ask the patient to fill in a questionnaire about how they feel about rhubarb. Smack them with rhubarb. Ask them to fill in a questionnaire about how they feel about rhubarb again. That'll give you plenty of data to claim something about rhubarb with, and that's before you've even started with the custard.

 

[TiredSam]

Any patients who don't respond to rhubarb will be taken into custardy.

 

[Hutan]

That will show them that rhubarb therapy practitioners are not to be trifled with.

 

[Barry]

And of course patients can be presumed to just be pudding it all on.

 

[Trish]

And getting our just desserts.

 

[Squeezy]

  Take your bows, funny people! Very entertaining!

 

[Wonko]

Despite being completely unable to move for a little over 13 billion years, after only 9 years of corrective therapy involving breathing, eating weetabix and strictly controlled doses of thunderbirds (it was only on once a week) I was able to climb, and descend, Ben Nevis - of course I did require assistance, being completely unable to do so until driven to the bottom of it.

I know it's probably not the thing to say but I found the whole experience pointless, the top of Ben Nevis is even worse than most other places, in that, once there, a considerable amount of time and effort has to be expended to get to somewhere nice, or comfortable. If the top of large hills was such a nice place why have we spent the entirety of history mostly not being there? If I, at 9, could figure this out what's wrong with the people who insist on climbing large hills, and then coming down again, and going to somewhere better (to tell anyone who'll listen how great it was to be on top of a large hill), which is more or less everywhere else.