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  1. Simbindi

    MS research versus ME/CFS research

    However, it is not that uncommon to get MS whilst relatively young. My daughter's best friend was diagnosed with it in her final year of uni. She has gone on to have a successful legal career and now a young baby (while still in her 20's). So these working adult sufferers are likely to be...
  2. Simbindi

    How ME/CFS Progresses: A Framework for Research and the Prevention, Treatment, and Rehabilitation in ME/CFS Nacul et al 2019

    But not possible if you have caring or parenting demands (for example). Additionally, the 'final straw' may be an acute infection or other disease, an accident etc.
  3. Simbindi

    Obtaining work-related disability benefits in the UK: ESA and UC general guidance and advice

    Other members have mentioned Fightback4justice as being very useful. I don't know much about this organisation, but hopefully members who do will post more information about them on this thread.
  4. Simbindi

    Obtaining work-related disability benefits in the UK: ESA and UC general guidance and advice

    This organisation provides some of the best guidance for ESA and UC (as well as PIP and DLA). They have been mentioned and recommended in this forum across many threads and posts, but I'm putting a link here too so that it can be readily seen by members needing working age benefit advice...
  5. Simbindi

    Obtaining work-related disability benefits in the UK: ESA and UC general guidance and advice

    This is the link to where you can find some information about the training the Health Care Professional who will be assessing you has received: https://www.disabilityrightsuk.org/news/2014/september/wca-assessors-how-much-training
  6. Simbindi

    Obtaining work-related disability benefits in the UK: ESA and UC general guidance and advice

    I am starting this thread to bring together all the links to guidance and advice for claiming the main UK disability benefits of Employment Support Allowance (ESA) and the new Universal Credit (UC). This thread is intended for general links and advice, not specific to any individual's...
  7. Simbindi

    Obtaining Social Care in England for service users and carers: guidance and advice

    Link to a free downloadable guide to getting Social Care in England: https://www.disabilityrightsuk.org/care-act-guide
  8. Simbindi

    United Kingdom: National Health Service (NHS) news

    Aren't they using absolute numbers rather than percentages though? So larger hospitals will seem worse when they may be better than some of the smaller Trusts.
  9. Simbindi

    Flower Arranging Helps Reduce Fibromyalgia Pain

    I think you've hit the nail on the head there! My daughter recently said to me, 'All my friends' parents use cannabis for their pain now.' My immediate thought (as someone who has never taken illegal drugs) was, 'But how do they know where to get it?'
  10. Simbindi

    United Kingdom: The Royal Society of Medicine

    If only we had Dr Who as a member of the forum...
  11. Simbindi

    United Kingdom: The Royal Society of Medicine

    Can we chip in and buy him a clock as a hint that it is time to retire?
  12. Simbindi

    United Kingdom: The Royal Society of Medicine

    Yes, being on this forum has made me much more astute to what is actually happening in the NHS. What seem like highly desirable approaches to most patients, such as the 'integration of services', 'extending community-based services' and 'treating people holistically', are in reality just...
  13. Simbindi

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

    When I was going through my divorce and had to discuss some of my ex's quite extreme behaviours with my solicitor, he warned me to 'not involve a psychiatrist' unless absolutely necessary. He then said they had a well-used joke in the legal profession that you could only tell the psychiatrist...
  14. Simbindi

    What is "Chronic Fatigue" in the Wessely School (CFS vs CF Wessely 1997, Prins 2006, White 2011)

    For some unknown reason I've always pronounced his name 'Weasel-ly'. I can't seem to change my internal voice's way of saying this when I read his name, even though I now know i've been spelling and reading it wrong. It couldn't be because my brain keeps making this connection whenever I think...
  15. Simbindi

    The Guardian: 'Like someone flicked a switch': the premenstrual disorder that upturns women's lives', 2019

    Going through the menopause hasn't improved my fatigue, headaches or pain levels, and the muscle stiffening/cramps in my limbs have actually got much worse. However, I do notice the difference in my mood and ability to control my emotions - I used to get terribly tearful for 2 weeks out of my...
  16. Simbindi

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

    But it's not about convincing doctors and other health professionals whether ME is 'real' (mental illness is real as often quoted by SW et al), but about the NICE guidelines explaining clearly what having ME (or ME/CFS) means for a patient, that it is not just 6 months or more of 'chronic...
  17. Simbindi

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

    Well, another problem is 'modern' surgeries just assign patients to random GPs as their 'named doctor' on the practice system, despite the patient seeing a completely different one as their chosen, regular doctor. Whenever the hospital consultants have written to 'my doctor', the letters are...
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