Just have to make some comments on the Rantzen news, which I find absolutely amazing!
This story illustrates so much - and this breakthrough for the Rantzens could perhaps prove to be a watershed moment for us. The Rantzens are a pivotal family in the public face of ME in the UK, and as we know, Esther's misguided approach has been immensely harmful to the cause of people with ME in the UK. But maybe this personal breakthrough for them could end up being a breakthrough for us too, indirectly...
Several things jump out...
- If the Rantzens are now saying "Emily has celiac, not ME after all", then that's got to be good news for us. It means that all of Emily's CBT and Lightning Process "cures", by implication, weren't really cures at all, but just self-delusion. It also means they weren't even "pseudo-cures" of ME, but "pseudo-cures" of something else. This has to be a good thing for all of us, if the Rantzens understand all of this now, at long last...sometimes, being told something repeatedly is not enough - you have to see it with your own eyes...
- But HOW ON EARTH can it be that a powerful campaigner, with money and contacts and medical resources, sees her daughter remaining ill for 14 years with alleged ME, and never tries gluten-avoidance!!! This is only possible, surely, by rigorously avoiding any genuine ME/CFS physician and any decent alternative practitioner! I can't think of any half-decent practitioner or physician I've seen who hasn't mentioned gluten on the list of things to try avoiding; it's one of the first and most basic things to try. To me, it's simply spectacular that somebody in Esther Rantzen's position can be discovering gluten-avoidance right now!
- Isn't it revealing, too, the way that Esther highlights the responses of physicians to the news? An elderly surgeon confidently assures her that the fact that the rash has now gone just means that it never existed in the first place. A trainee doctor explains that actually it's now well-known that celiac disease can cause such rashes...when you hear this sort of discrepancy, the scales start to fall from your eyes...
- It has to be good, surely, if Emily does indeed have celiac disease, because surely that discovery would have to teach Esther that people diagnosed with ME/CFS in the UK frequently have all kinds of other conditions which the medical world simply can't be bothered to investigate. ME/CFS is a diagnosis which is used in the UK to deny medical treatment and research to sick people. It's a way of saying "I give up". Hopefully she realises that now. Hopefully she will now turn to campaigning based on the understanding that the way the medical establishment has failed her and her daughter is a scandal.
- I'm very, very sceptical, though, that it will turn out that Emily does just have celiac disease. Very many of us with ME develop gluten intolerance later during the course of our illness. This is clearly something of which the Rantzens are completely and determinedly unaware, because they have clearly completed avoided all the responsible ME/CFS physicians - they've even positioned themselves in strong opposition to the very people who would have told them to try avoiding gluten! - and instead have trusted the quacks who dominate ME/CFS in the UK. But unfortunately, as badly-advised as they are, this would suggest that all they have now discovered is one of the factors in Emily's illness...and the next round of news about Emily, I suppose, will be filled with yet more confusion. Even so: any kind of breakthrough like this is hugely valuable to the individual, and so hopefully will be for us as well. If the Rantzens have now learned, through their own experience, of something that makes a big physical difference to Emily's suffering, which they had to figure out for themselves, which turns out to be well-known to patients and 'controversial' doctors but unknown to the mainstream and even vehemently denied by the mainstream...then welcome to the club! Will this experience make them angry too? We will see...
- Discovering a genuine, undeniable physical explanation for some of your symptoms is a powerful moment for all of us. When those undeniable physical observations are then denied by one's physicians, that becomes a defining radicalising moment as well. That's the moment when one suddenly knows - rather than just suspecting - that one's trust in the medical world has been totally misplaced. You see them sitting there, confidently and definitively telling you something that you know is definitely not true...and you can't come out of that experience unchanged by it: you have your proof now, even if it only works for you personally and no doctor or scientist will accept it as "admissible evidence". So: whether Emily does or doesn't have gluten intolerance confirmed officially, I would hope that either experience would add up to a shocking and eye-opening revelation for Esther.
The bottom line is: however the Rantzens' personal story unfolds from here, it just seems to me that it has to be good news for us. Esther seems to be set to learn the truth at long, long last - one way or another. Whether Emily has purely celiac or other intolerances as well; whether she has ME or not; whether the celiac disease is confirmed by physicians or not...whatever happens, the story of her daughter's 14 years of misery, dramatically resolved by something bleedin' obvious that the doctors should have identified, and should have advised on...that surely, surely, has to be a radicalising experience.
If only Esther could figure out some of the right targets to focus her campaigning energy on - the very people who are close to her, who surround her, who she trusts and who have been misadvising her and sustaining her family's suffering for all these years - she may yet turn out to be a formidable ally indeed, at the end of the day, which would be a most welcome change from the role she seems to have played so far...