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  1. Simbindi

    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    'Technically' there will be 'monitoring of outcomes and targets', but these have been very cleverly devised to give the appearance of 'over 50% recovery' in keeping with the standard IAPT agenda for anxiety and depression (as have been discussed on other threads). With regard to 'CFS/ME' the...
  2. Simbindi

    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    It (IAPT LTC and IAPT MUS) is being imposed on every Clinical Commissioning Group across England (by NHS England) - even though many are in financial crisis. I wonder if this is a contributing factor to why journal editors and Cochrane are trying so hard to avoid retracting the relavant trials...
  3. Simbindi

    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    Did you not spot the names 'Chalder' and 'White' on the member and special advisor list?
  4. Simbindi

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    The Accessible Information Standard applies to every person who has a communication problem due to either a disability or a health condition. It is not just for people with visual impairments and/or hearing loss. I've been meaning to start a thread specifically on it, but haven't found the...
  5. Simbindi

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    I agree. Even if I did not have M.E., due to my autism I would not be able to participate in any consultations or research that used only phone and/or skype or a verbal interview (i.e. that required speaking verbally). Is it acceptable to exclude adults or children from any NHS research and...
  6. Simbindi

    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    I recommend reading: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6482658/pdf/10.1177_2055102919838907.pdf as an antedote to the trauma!
  7. Simbindi

    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    I knew I remembered reading more about the planned referral and step up process for IAPT MUS (including CFS/ME). I have found the PDF on my laptop. The link to it is here...
  8. Simbindi

    UC50/ESA50: How your disability affects you

    You've asked for people to share their personal experiences in the public part of the forum. You may want to get this thread moved to the members only area.
  9. Simbindi

    UC50/ESA50: How your disability affects you

    Use the Benefits and Work guides, as others have said. They give you advice on every question and descriptor for both the UC50/ESA50 and for the PIP forms. They are written by lawyers specialising in the area of UK benefits. Worth much more than every penny! Edit: They also offer advice and...
  10. Simbindi

    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    To save this thread getting too broad, I have started a thread for discussing IAPT MUS CBT further here: https://www.s4me.info/threads/discussions-around-iapt-ltc-and-mus-relevant-to-nice.11220/
  11. Simbindi

    Discussions around IAPT, LTC and MUS relevant to NICE

    I've started this thread for discussions regarding the methodological issues and efficacy of the IAPT treatment model. In particular the move to treat 'CFS/ME' as a MUS that can be referred for IAPT CBT/GET treatment is now highly relevant to the ME/CFS NICE guideline.
  12. Simbindi

    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    I think in regards to MUS they are intending for patients to see the 'High Intensity CBT therapists'. At least, the training manuals are directed at the more highly trained therapists and are currently being offered as 'top-up' training. I've seen the manual uploaded somewhere on this site...
  13. Simbindi

    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    I looked into this many years ago when I wanted counselling via my GP's surgery. I had to battle to get that via IAPT and was shocked at what was happening in the mental health services. I'll see if I can find the evidence I used on my old computer (cost of IAPT was even higher earlier on), but...
  14. Simbindi

    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    I remember reading in relation to IAPT CBT that the NHS estimates the overall costs to be £100 per individual session to the CCGs, which is actually much higher than the cost would have been when the CBT therapist (or person centred counsellor) was employed directly by the GP surgery. However...
  15. Simbindi

    Google bans advertising for speculative and experimental medical treatments

    Looks like they are focusing on unevidenced biomedical treatments, not psychotherapy, physiotherapy, rehabilitative treatments or 'alternative medicine'.
  16. Simbindi

    UK article: Mum trapped inside home says she feels like a burden on her family

    Yes, you can lease a powered wheelchair through the Motability Scheme instead of a car. However, if you need both then that is a problem unless you have the money to cover the additional costs, because most people with even severe M.E. will not be eligible for an outside powered wheelchair...
  17. Simbindi

    Monaghan & Shepherd meeting DWP and assessment companies

    They must have relaxed their interpretation of 'identical' then, since the only way it is possible to acheive this in two copies is for a single device to make a dual recording with a single microphone. However, it is good if the DWP are being flexible in this now. The downside to using amateur...
  18. Simbindi

    Monaghan & Shepherd meeting DWP and assessment companies

    Agreed! That's why the charities need to get much more rigorous in advocating for us on this.
  19. Simbindi

    Monaghan & Shepherd meeting DWP and assessment companies

    I don't think they will supply the recording equipment if you have a home assessment. Also, I'm pretty sure it has to be the official dual recording equipment (i.e. a specialist single machine that can make two simultaneous recordings on tape or CD - the type used by the police).
  20. Simbindi

    RoB 2: a revised tool for assessing risk of bias in randomised trials (2019) Sterne et al.

    I followed this trial with interest as the young lady who previously supported me (for mental health reasons) dad was part of this trial. She felt many of my symptoms were very like her dads (difficulty walking in a straight line, gait, standing upright, memory problems, tremors etc.) She...
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