LETTER, Re: The secret of Emily's 14 lost years (Daily Mail, 12 Feb 2011)

drjohn

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Enid

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Many thanks drjohn for posting. Is it really that simple for all the complications one wonders. Hope Cort may (if not already) pick up for a Poll - sort of who tried non-gluten and did it aid/relieve all symptoms. Never tested myself but will do so now in case. Thank you.
 

maryb

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Many thanks drjohn. Good letter - of course its all tosh that the Ranzten family utter every year without fail about ME, I was diagnosed with gluten intolerance 18months after starting with this illness, I have never touched gluten since, am I better, of course not, but I don't want to add to the stress my body is already under so I will stay off it.
 

Esther12

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Personally, I think other patients can be a bit hard on Esther Rantzen and her daughter. I wish they weren't so often featured as the public face of CFS/ME, but they are in a difficult situation, and don't think the bitterness that sometimes gets directed towards them is really fair. I expect most of us have gotten caught up in some silly health fad at some point in our illness that other patients would cringe to be associated with.

I'm not saying that John's letter goes to far this way, I've certainly seen a lot worse, but it's a bit close to the line for my tastes. (I was going to make the points above anyway after reading the DM piece, and this just seemed an appropriate thread - it's a bit OT really - sorry).

(Also... the Daily Mail article didn't mention any positive blood test results for coeliac. Is this a bit premature? They mentioned the testing, but never that Emily had it, or what her results were.)
 

drjohn

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There's no need to apologise for having that opinion Esther. Of course, I disagree and do not think that I gave either Esther or her daughter a hard time. I hope you will take the same fair opportunity of airing your opinion in the same place that I have, under the original article. It's the way we make progress by having discussion of different views.
 

drjohn

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We are not sure, Enid and maryb, whether Emily has Coeliac but a point that is being repeated online is that she has now claimed to be recovered 3 times from M.E. This may give false hopes to people who do have M.E. (whether or not they have a problem with gluten). I don't think these points can be made too many times.
 

busybee

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No more fake it till I feel it

Apparently this is what recovery feels like when you use LP

'In the years since my recovery in 2006, I've been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to 'fake it till I feel it'. Emily Rantzen
 
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Apparently this is what recovery feels like when you use LP

'In the years since my recovery in 2006, I've been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to 'fake it till I feel it'. Emily Rantzen
Wow. That is really telling isn't it!
 

jace

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Esther Rantzen is the President of AYME - Action for Young people with ME - and has spouted the benefits of the Lightning Process and encouraged the SMILE study. She really needs to rethink her priorities.
 

pictureofhealth

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This story also highlights the 'postcode lottery' that still exists in the UK in terms of the quality of service patients receive from their GP. I have already seen comments from people on this and other forums confirming that their GP did not think to test them to exclude a diagnosis of Coeliac disease before giving an ME/CFS diagnosis. Imagine what else might have been missed?

This is especially important i) in light of the NICE guidelines for pre diagnosis testing when a patient presents for the first time with fatigue and 2) the question asked by the Countess of Mar in the House of Lords recently about whether we can be really sure that patients diagnosed with ME & attending 'fatigue' clinics, have not been misdiagnosed. Coeliac disease is not the only candidate. Haemochromatosis can mimic many aspects of ME and is frequently not a standard test in GP practices when a patient (adult) presents with severe fatigue.
 

drjohn

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Thanks Enid. A poll would be a great idea, for those who have/have not been diagnosed with Coeliac, whether with another condition or not and whether they have tried non-gluten and how they got on.
 

drjohn

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So much for our "national" health service, pictureof health. Our health system has not been "national" (certainly not in the way it was conceived in 1946 ----- waaaaaaaaayyy before my time) by definition, since we have had health care trusts in all parts of the UK. As you say, it depends on who you get and how much they have in the kitty at the time.
 

drjohn

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I'm worried about the word "fake" in any context to do with M.E. It reinforces so many myths and prejudices. This is not doing us any favours at all.
 

drjohn

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I mentioned the use of the word "fake" above. This doesn't seem to me to be a "recovery" at all, yet it is heralded as such.
 

pictureofhealth

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I'm worried about the word "fake" in any context to do with M.E. It reinforces so many myths and prejudices. This is not doing us any favours at all.
Hi Dr John, I think Jace may have been referring to Emily's efforts to use the LP process to feel better. I think she means that the LP didn't work at all and that it only encouraged her to force herself to stay active and think positive (ie 'fake it until you make it' - 'smile and the world smiles with you' etc approach), as opposed to the LP actually curing her ME. ie the 'fake' comment refers to having to pretend to be well/convince your self you are well, using the LP technique, rather than any reference to the ME v Crohns.

Sorry if I've misunderstood either one of you/your posts though!