The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Webinar for GPs in the UK with Dr Julia Newton

Discussion in 'Upcoming ME/CFS Events' started by tinacarroll27, Apr 18, 2017.

  1. tinacarroll27

    tinacarroll27 Senior Member

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  2. keenly

    keenly Senior Member

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    Apparently Newton has sold out. Action for ME are useless.

    She is not looking for causes, or treatments and has been pushing the usual garbage.
     
  3. markielock

    markielock staying independent, one day at a time

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    @tinacarroll27 and @keenly, apologies for the brief segue: I hope you don't mind my asking but why is it you dislike and don't trust Action for ME? I'm not very well connected to the various organisations and I am genuinely curious to understand :). Thanks.
     
  4. tinacarroll27

    tinacarroll27 Senior Member

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    I thought that was probably the case. The fact she is involved with Action for ME tells you everything you need to know
     
  5. Snowdrop

    Snowdrop Vexacious, thy name is PACE

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    @markielock

    AfME has supported CBT/GET and research by people like Esther Crawley (paediatric). They have on their website info that would suggest that there are problems with suggesting GET as a treatment but their actions often seem to conflict with what they say. They waffle on the fence, never willing to take a direct stand with patients for the benefit of patients. Or so it seems to some of the patient community. They are the only charity (as I understand it) that have a paid CEO.
    There may be financial issues as to where some of their funding comes from that make them cautious about opposing the BPS model of this disease.

    See: http://forums.phoenixrising.me/inde...evalence-study-funded-by-action-for-me.44622/

    http://forums.phoenixrising.me/inde...or-me-or-inaction-for-me-or-even-worse.50190/

    I think they are really just behaving like any organisation -- they look after the interests of the organisation first -- the reason for existence (in this case advocacy for ME patients) second.
     
    moosie, ladycatlover, Hutan and 3 others like this.
  6. Esther12

    Esther12 Senior Member

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    They helped with the running of PACE and have been bending over backwards to avoid criticising it since then. It seems like it's run by idiots who cannot understand the problems with White/Crawley/etc. Could go on about them for hours.

    It does make me feel less than enthusiastic about any sort of 'education' that they are providing.
     
  7. Snowdrop

    Snowdrop Vexacious, thy name is PACE

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    Without knowing what content to expect how can people assess whether this would be a good idea?
     
    Esther12 likes this.
  8. Kina

    Kina Moderation Team Lead

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    Screenshot of email. Am I crazy or is one sentence in the email totally nonsensical. As in "Participants will learn how in those with ME/CFS they can: ...."

    It inspires no confidence in me that Action for ME is doing this -- we do not want GP's attracted to this site in any manner.

    IMG_0053.PNG

    Seems to be about POTS rather than ME.
     
  9. Chrisb

    Chrisb Senior Member

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    A couple of commas would make it make sense.
     
    Kina likes this.
  10. Effi

    Effi Senior Member

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    Does POTS mean 'positional tachycardia syndrome' now? That's definitely new! :rolleyes:
     
    Joh and AndyPR like this.
  11. Deepwater

    Deepwater

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    I'm no apologist for Action for ME or for Dr Julia Newton's recent research, but there is a real problem in England & Wales in getting diagnosed with PoTS if you have ME. I have all the symptoms of POTS and have tried to raise the subject with GPs on more than one occasion but always just get met with stony-faced silence. GPs are either ignorant of the fact that PoTS goes hand in hand with ME, and so think your concerns are proof of hypochondria, or they are running scared of the NICE guidelines which specifically state that testing for PoTS should not be routinely carried out on CFS patients. So this guidance could actually be very beneficial to us. The situation for patients in the UK is not the same as it is in the US - I can't stress this strongly enough.
     
  12. Binkie4

    Binkie4 Senior Member

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    http://www.meresearch.org.uk/news/webinars-by-prof-newton/

    @Deepwater - just found the site above with some webinars from Julia Newton. Have not yet watched them and will not today because am crashed but perhaps they would help get a perspective on what Dr Newton might say.

    GPs desperately need training on this. My GP looked at me as if mad when I mentioned Pots.

    @Kina - I can't see too many problems with what is written. Agree a couple of commas would make it clearer as @Chrisb said.
     
    SamanthaJ likes this.
  13. NelliePledge

    NelliePledge plodder

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    Dr Newton only recently became AFME medical advisor. She isn't responsible for what happened in the past. I think she should be given a chance rather than just written off for getting involved with that organisation. From the Netherlands material she seems ok.
     
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  14. Binkie4

    Binkie4 Senior Member

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    mango, Jan, Snowdrop and 2 others like this.
  15. slysaint

    slysaint Senior Member

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    I agree to giving J. Newton a chance, but the problem is where AfME is concerned 'what you see' is not always 'what you get'.
    Eg it's no wonder the NHS and DWP support them:
    "Our SEE M.E. project
    Support, Empower and Employ people with M.E. (SEE M.E.) was an innovative pilot project that transformed employment outcomes for people with M.E. in the South West."
    https://www.actionforme.org.uk/living-with-me/managing-work/see-me-project/

    Sounds in principal a reasonable project. But then the video features Hazel O'Dowd.....
    the Bristol Chronic Fatigue Syndrome/ME Service NHS North Bristol
    https://www.nbt.nhs.uk/our-services...ndromeme-service/chronic-fatigue-syndromeme-2

    "The Bristol Chronic Fatigue Syndrome/ME Service has ongoing involvement in research projects, including a recent study completed by Dr Jade Thai at the University of Bristol............

    http://www.bristol.ac.uk/cgi-bin/se...&uob_ou=Research&words=cfs&submitwords=search

    " FITNET, MAGENTA,SMILE etc etc etc"

    all roads lead to EC
     
  16. Binkie4

    Binkie4 Senior Member

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    I agree that there is good reason to be very cautious around AfME.

    Julia Newton's approach in the utube clips however


    http://www.meresearch.org.uk/news/webinars-by-prof-newton/

    Was purely biomedical. I know nothing about Dr Kavi.

    It would be good to know from someone who can get access to the webinar @charles shepherd or any other clinician exactly what approach Prof Newton takes, so that we are up to date with her perspective . The clips are also dated 2014 so the new info will hopefully move on our knowledge.

    If the old PACE rubbish is recycled, then we will really know what we are dealing with.

    PS Dr Kavi is a GP in Birmingham with family members with Pots, and is a trustee of Pots U.K.( quick Google)
     
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  17. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    This is my official diagnosis given a couple of years ago by Prof. Newton. She's the only person i've personally come across who uses this term.
     
    Effi likes this.
  18. Deepwater

    Deepwater

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    Do you live in the North East, or if not how did you manage to get a referral? Things are desperate for PwME in my neck of the woods.
     
  19. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Yeah I am. I just emailed her and explained the results of my poor man's tilt test at home and asked if I could see her and she said yes, so my doc did the referral.

    Before I could see her I had to have the tilt table test done first (in her department) then straight after undergo a few hours of abuse by an ignoramous who works there (explained in one of my blogs on here)

    Where after being made seriously ill after hours of questioning while in a shaking, collapsed state and crying with exhaustion we walked/wheeled out before they could damage me further.

    There was no point in putting up with his insulting comments and attitude as he refused to give me the diagnosis of POTS even though my results proved otherwise.

    It wasn't until I saw Prof. Newton at the next appointment that she gave me the diagnosis after hearing that he wouldn't do it despite my results.
     
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  20. Deepwater

    Deepwater

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    Thanks very much for this information. I'm not sure if my heart rate with cooperate diagnosis-wise, but I sure have problems remaining upright, particularly standing still, and my brain disappears and I get waves of nausea and hot flushes if I don't lie flat every couple of hours. Is it possible to have problems getting blood to the brain without getting the tachycardia?
     

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