Hi
@MEMum. I’m just responding to your comment from the other thread:
“I don't think we can expect Dr Myhill to do double-blind placebo controlled etc studies, given that all her patients are paying.However I feel that if significant numbers were getting well enough to return to work and get off benefits, then more of the ME community (PwME and carers) would have heard about it.Any comments I remember seem to have been of small, incremental changes.” [My bold]
There are many recovery stories on here with significant numbers reporting that their improvements were linked to the sorts of treatments Dr Myhill recommends. Of course we don't know whether these people have correctly identified the reasons for their recovery and so it’s difficult to draw any conclusions from this. But the anecdotal evidence is there for sure.
@Jonathan Edwards:
“But if Dr Myhill has not done a proper trial she was presumably handing out treatments when she has no idea if they work or not.”
I think Dr Myhill believes (rightly or wrongly) that the treatments she hands out do work. Yes, she does experiment when she is treating patients. I don't see a problem with this, providing it is made clear and the risks explained.
@Jonathan Edwards:
“I very much doubt she said to patients 'I have no idea if this works or not but try it because I have a theory it will work that I will never actually know the validity of because I am never going to test it properly'.”
Actually she does admit that she sometimes tries treatments when she doesn't know if they will work or not. For example this is what she says on her website when explaining the indications for use of Enzyme Potentiated Desensitisation (EPD):
“I do sometimes use EPD for the worst possible reason, that is I can't think of anything else to do when all else has been tried. However it is surprising how often this works!”
(Note also here that Dr Myhill believes she is able to determine that this treatment works just from the clinical response).
Many ME/CFS patients want to experiment with different treatments even if there is only poor evidence for their efficacy. For many of us, we fear that the risk of not trying anything is greater than the risk of experimenting. We need practitioners like Dr Myhill who can assist us through this process.
@TiredSam:
“The amount of evidence needed to demonstrate that what Dr Myhill is saying is nonsense is zero, so there's enough. If she provides no evidence for her claims then she hasn't given anyone any reason to believe them or to go to the effort of disproving them, there's nothing to disprove.” [My bold]
It’s not the case that she provides no evidence for her claims. I understand that people might want to question the reliability of that evidence but it's incorrect to say that there is none there in the first place.
@Jonathan Edwards:
"So the long and short of it seems to be that claims for harm following GET need to be substantiated with convincing controlled study evidence."
Do none of research findings from Ron Davis or any of the scientists provide evidence that GET might be harmful? Is it not possible for an understanding of the biomedical nature of disease to provide reliable evidence for whether a treatment may be beneficial or harmful? (I believe this is the type of evidence that Dr Myhill draws on heavily in making her claims).
@mango:
“I used to be very interested in Dr Myhill's advice and articles. I tried a lot of what she suggested, but sadly it didn't work for me.However, my interest in what Dr Myhill has to offer totally disappeared after listening to her talk at the Abundant Energy Summit in 2015.http://forums.phoenixrising.me/index.php?threads/the-abundant-energy-summit.39513/In her talk she made a number of statements that I found hugely off-putting, such as claiming that CFS isn't a diagnosis but a "clinical picture", that carbohydrates and vegetarianism cause CFS, and that people get CFS because they stay up all night studying and drinking buckets of coffee, eating lots of chocolate bars. She also expressed several very judgmental things about the personality traits of CFS patients as a group.She also claimed that the only ones who don't get better with her treatments are the ones who don't try hard enough or not long enough...I was shocked and felt very upset after listening to that talk.”
I am sorry to read this
@mango, I’m not surprised you felt that way. Dr Myhill absolutely deserves criticism for saying some of these things.
@Jonathan Edwards:
"Unfortunately, audit is quite often hijacked as a 'soft' way of trying to show a treatment works. 'Let's see if the treatment we have been using is making people better'."
"If your lightbulb moment comes from lab science rather than an anecdote, as in my case, there is a place for a small preliminary trial that is not expected to provide reliable evidence that the treatment is effective but can be expected to give some idea whether the whole thing is a waste of time or whether a full trial should be set up."
Is it not possible that the science laboratory could become hijacked in exactly the same way as you describe for an audit?
