Discussion in 'General ME/CFS News' started by Kyla, Oct 9, 2015.
This looks like a substantial improvement. Dr Miller was overly enthusiastic in toeing the NICE line, but Dr Purdie was involved in the Scottish Good Practice Statement on ME-CFS, which is very pro-pacing, focuses on PEM as the main symptom, and mentions CBT/GET but with a distinct lack of enthusiasm.
And we all know who Dr Newton is, of course
Dr Gregor Purdie
Sounds fairly standard for AfME, I'd say.
Yes worldbackwards I see what you're saying, a bit of a mixed bag, but he does sound more open minded than Miller and with Dr Newton with him a big improvement overall.
@worldbackwards - I see that's a quote from a piece by Dr Purdie on the DGblog.
He starts off talking about "chronic fatigue" rather than chronic fatigue syndrome, alas although even Nancy Klimas and others do that but this is more promising:
Perhaps he and Prof. Newton will make some sort of statement that would introduce AfME supporters and others to their approach? That would be very welcome.
That is interesting, and clearly a break from Miller. I do feel though that he's taking that "look at those extremists to either side of me", oh-so-reasonable approach which marginalises patient experience and has characterised AfME for far too long.
He may well believe the jury to be out about those treatments but the "holistic" approach he talks of still seems to indicate that he believes Psych issues must be addressed as part of standard treatment.
I'll repeat my standard assessment of these types, which is if you aren't quite sure where they are on the spectrum, they probably aren't on our side. But I'd welcome to be proven wrong.
Certainly an improvement, where improvement was sorely needed. The old guy said some stuff every now and again that was terribly unhelpful, and was one of the main reasons why I have not been much of a supporter of AfME in the past. I like Julia Newton and the other person looks quite a bit better too - hopefully much better, though I know little about him.
Will wait and see what actions AfME take before I get onboard though.
I haven't seen any real indication of that. Though it does sound like he thinks diet changes and similar approaches can be helpful for some, which could be where the "holistic" is coming from.
Hurray! This has surely got to be good news! I've just flicked through the Scottish Good Practice Statement on ME-CFS and it's not at all offensive. It's very modest in scope, but it's sensible, sensitive and well informed as to the nature of ME symptoms. There's a single (very brief) mention of CBT/GET that says they've been shown to be helpful for some (unfortunately it's almost impossible for an official document to avoid saying this in our current political circumstances) but it's balanced by then saying that others have found them unhelpful. Otherwise there's quite a major emphasis on pacing and holistic care. Judging by the document, it seems that when Dr Purdie talks about holistic care, he means exactly that, and it's not a euphemism for CBT/GET; i.e. he means pacing, treating symptoms, and taking care of diet and mental well-being etc. There's no mention of biomedical research or potential biomedical treatments in the document, but Dr Julia Newton will presumably take care of that side of things. My enthusiasm may yet prove to be misguided, especially as I don't know anything about Dr Purdie, but I'm very pleased they've changed their medical advisor.
This is what I mean (from the blog quoted above):
This is placing himself in the middle, isn't it?
Woohoo! That's for pushing Miller out the door. He could see his time was coming no doubt. He has been mentioned on twitter a few times and with a lot of articles coming out supporting the psychology produces crap studies and being shared about. He could probably see that the curtain was being pulled back exposing the lie.
As for the new--it seems quite hopeful. I personally have been hard on AfME comment wise. I would like to recommend them but have a zero tolerance for CBT bullshit.
From the comments above I have trouble comprehending how Dr's come to think about all things illness wise. I'm sure from being here that some people have benefitted from diet changes but those people that have are people who have food sensitivities. Which can be a component of ME in that (for example) as my illness has progressed I have more allergic sensitivities, although not to food but my allergy symptoms have worsened over time. This in itself, in my opinion is not ME although it may be as a result of having ME that they exist or have worsened.
Treating my allergies is not akin to addressing my disease process ME. Although treating my ME might result in resolving allergy issues.
While that may be holistic (treating all the symptoms) it goes overboard with the unity idea. That things are all related has been sadly neglected in the past. That everything is all related to such a degree that there is no teasing out something specific seems nonsense.
ME is not food allergies. Same as I have other autoimmune issues that are not ME but I'm not celiac.
And whoa that went somewhat off topic.
I hope this is a new chapter for AfME it would certainly be welcome.
Perhaps this is good news for mind body CFS supporters who find AFME's policy on backing GET & CBT reflects their fatigue based syndromes?
Is it possible Dr Newton joining AFME (AFME supported the PACE trial) is now positioning herself side by side with the mind-body dualists in which CFS is 'real'?
It would seem unlikely, although from what I gather, Dr Newton has published 7 papers with Vincent Deary - (Wessley School).
The Vincent Deary group on CFS as PPS:
And PPS as CFS is again mentioned here:
So I tried to imagine the consequences of being misdiagnosed with MUS/PPS, which we are told is CFS.
I remembered the Scottish NHS guide, that was made for doctor's and you can find some quotes below that might sound rather familiar from the Wessely School on BPS CFS.
Please find attached an NHS Scotland MUS evaluation (Which Dr Newton's colleague, Vincent Deary specialises in), that includes the following advice. (nb: PPS is an MUS. PPS is said by Vincent Deary to be CFS, IBS etc).
It's too big to attach, so download it here if you want to flick through it:
So it's odd to me, that Dr Newton would undertake research with Vincent Deary or even join AFME?
It's very confusing and doesn't look sensible to claim MUS/PPS = CFS if you have a disease process that affects your heart and immune system (ME or CFS) to be told that symptoms are perpetuated by your mind and not the underlying disease process (e.g. Autoimmunity, Infection, POTS etc).
I'm thus not convinced Dr Newton joining AFME is a 'good thing'.
Re: @Research 1st
<sigh> I couldn't include anything of possible interest of Julia Newton's work in the document I created earlier this year because when you google her work it connects you to the NHS and their guidelines for treatment. I had hoped that J N was someone who could rise above the propaganda but the connection was enough to veto inclusion. I was desperate to find something untainted by CBT in terms of research but could not come up with something.
There was also someone here (can't remember who) who stated they had gone to an appointment with Dr Newton and they were aghast to discover she supported the guidelines. I'm quite honestly having a hard time with this. It seems the UK PWME can't catch a break. I mean why after getting Dr Miller to leave replace him with MOTS. Do they think that perception ie Julia Newton has done some good biomedical studies will cover up the smell of support for CBT.
I would like to think that JN will be more amenable to reason and common sense now if she is going to represent an advocacy group for ME.
Maybe now that she is part of AfME she'd be willing to make her thinking regarding ME and CBT/GET as treatments clear for all. Worth asking her to clarify her stance.
Is it even possible for JN to not understand this issue? CBT/GET cannot possibly be any kind of gold standard treatment for any biological illness. Illnesses need targeted biomedical treatments to be able to achieve any kind of gold standard with regard to efficacy.
I have my doubts about Julia Newton as well. Tends to pal about with Crawley and the like. The fact that we're even having this conversation tells you that these are standard AfME appointments. I'm not getting my hopes up in the slightest.
Me too, based on what some of her patients have reported regarding their clinical encounters with her and certain things she's written in her papers which were supportive of GET for some patients with a diagnosis of CFS.
It appears to me that JN treats a lot of POTS and seems to think that ME and cf due to POTS are the same thing. Much of what she says is very relevant to dysautonomia, which many of us have, but clueless about the full ME picture.
A definite improvement over Miller, imo, but she's not exactly the poster-doctor for ME specialists.
Not perfect appointments then. I guess we have to see how things pan out. Change was definitely needed. There's no doubting that Julia Newton is investigating a biomedical illness, so that's a positive. And Dr Purdie seems reasonable, but none of us know him.
A short video for ME awareness day, 2016, from Action for ME, with both of Acton for ME's new medical advisors...
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