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  1. Suffolkres

    Children with ME, schools and the problems of FII diagnosis

    But the school staff REFUSE to meet him at home..... The Local Authority officer and tutor have agreed, and they are as angry at Tilly about this, because they can see the need. Academies are a law unto themselves and beyond LA control or influence. It will take a court case ( civil) to get this...
  2. Suffolkres

    Children with ME, schools and the problems of FII diagnosis

    I think a group hug is in order @Tilly. I could squeeze the pips out of the Deputy Head and Safeguarding teacher at this school (an Academy....- what a can of worms!) Unprofessional utter shambolic and worse. But you have some great local officer support Tilly.....!
  3. Suffolkres

    NICE turns down Valerie Eliot Smith as stakeholder

    Our Suffolk Youth & Parent Support Group was at first accepted and we attended the January event. An officious NICE HR type woman came up saying she wanted a word with me. Her demeanor was such that I asked if i was on the naughty chair........?!!!! She said, "well sort of..." She said we didn't...
  4. Suffolkres

    Michael Sharpe skewered by @JohntheJack on Twitter

    Thank you so m uch for raising my pet issue which I discussed with NICE this week- They denied any reference to this in recent NICE Surveillance work- I know otherwise!
  5. Suffolkres

    Bristol - New Network - Prof Munafo

    I thought the recent Cochrane spat meant we had a new collaborative.....! https://blogs.bmj.com/bmjebmspotlight/2018/09/16/cochrane-a-sinking-ship/ Sounding a tad familiar....? Cochrane’s sinking ship The events that have unfolded in the last few days have consequences for Cochrane far beyond...
  6. Suffolkres

    UK: Forward ME charities at the RCGP conferences, 2018, 2019

    I have some inclining of the logistics at the event_ a 2x2 meter enclosure shared by 7 charities with many constraints on what can and can't be done and by whom..... Plus possiblity of a £180 fee for admission ...
  7. Suffolkres

    Children with ME, schools and the problems of FII diagnosis

    No Tilly!.....I think you actually recorded 35.5 c NOT 25.5 'cos he would be deceased that low or prepared for deep freeze! As we discussed this, we have also been using the Wilson Temperature Chart which helps, but even this chart does not have the right wider range of temp to record. Lowest...
  8. Suffolkres

    Children with ME, schools and the problems of FII diagnosis

    The problem arises when their is no specialist service in an area to do the proper assessment and provide a validated NHS diagnosis. Often, Local Education Authorities insist on referral to a paediatrician who may not be helpful- community pediatricians in particular have been a problem in our...
  9. Suffolkres

    Children with ME, schools and the problems of FII diagnosis

    At this stage, I think they're just trying to scare you because your son will be affecting their attendance scores. But definitely take an advocate with you, if you can. The local CAB might be able to help, or various charities. Right in one Adam! Hold steady, Tilly, help is at hand.......
  10. Suffolkres

    UK House of Lords/ House of Commons Questions

    It ceased in about 2015... at Bath. I spoke to the guy Simon M Collin who oversaw it and he has moved on to NHS England I believe, Departed from the field...
  11. Suffolkres

    How many BPS studies since 2014

    BPS treatment trial evidence base -(Historic) and for David T especially Tom K has given permission to repost this from 2002..........!!!! "Thanks Barbara. I don't actually remember writing that, but then I have written a lot on the Internet over the years." Date: Tue, 3 Sep 2002 17:59:50...
  12. Suffolkres

    NICE seeking committee members for Me/CFS guideline

    i had already sent them both the advert.
  13. Suffolkres

    NICE seeking committee members for Me/CFS guideline

    Received today.... Dear all, NICE are recruiting committee members to join the Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome guideline. We are looking to recruit to the following positions: · GP · Physicians with an interest in chronic fatigue syndrome ·...
  14. Suffolkres

    Who is Simon Wessely?

    www.researchgate.net/profile/trickcyclist/SW.et.al/ only joking Simon!
  15. Suffolkres

    Who is Simon Wessely?

    As for Camelford victims some who have died- you can't "mind over matter" in that.... https://www.bmj.com/content/311/7001/395.2 "The small Cornish town of Camelford is the reputed site of Camelot in Arthurian legend. But what of Camelford's other claim to fame—as the location of the water...
  16. Suffolkres

    CFSAC charter has not been renewed. Solve, #MEAction and Occupy ME all call for action.

    I do hope this will not jeopardise NIH grant awards as we in the UK have definitely benefited from them Biobank $3,000,000 of so etc?
  17. Suffolkres

    New Scientist: Probiotics are mostly useless and can actually hurt you

    https://wwws.wddty.com/lifestyle/2018/07/kefir-boosting-your-gut-and-your-mood.html https://www.wddty.com/magazine/2017/july/a-recipe-for-healthy-skin.html Husband has all the symptoms in bold and kefir I make has helped. I use raw A2 type protein milk. "A live solution We usually associate...
  18. Suffolkres

    Horton [Lancet editor] responding to push against paywalls by arguing journals 'stand for something'

    Horton's legacy, if he goes (but he won't)...and we are as ever, still at risk from Horton's support of the indefensible.......with FII and even M by P being resuscitated....... "Professor Sir Roy Meadow Horton published an article in 2005 supporting Professor Sir Roy Meadow who had been...
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