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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. U

    More from Science Medica Centre on SMILE

  2. U

    10-year old sufferer speaks out

    This is great- its all over our local news in the South West England- even my mum saw it and she never normally notices anything about ME/CFS in the media
  3. U

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    I wonder whether some of the missing data for school is that some of the patients may have left school at 16. I haven't looked very hard to find out whether the ages of the children are shown in the data. Also do the days treated as in school include where home tuition is arranged?
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    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    I'm frustrated by the circularity of the whole thing. The implication of blame on the patients for treatments not working rather than the possibility of the treatments just not working. I absolutely agree many will have tried LP because of external & internal pressures to try and get better...
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    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    Those assessed as ready to benefit from LP will be those willing and open to try- which will be those people who probably don't have ME/CFS or haven't heard much about the LP. Patients that experience PEM will be obviously less willing to try. Thus the results will demonstrate improvements...
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    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    So if its effective then the timing is just right to be incorporated into the new NICE guidelines? Parallel Universe moment.
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    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

  8. U

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    I have to agree as a mother that finding a specialist service was useful as it is the only way of obtaining the necessary paperwork needed for the UK education system if your child is unable to attend school. Most pediatrician (not all) consultants are unwilling to commit in writing to the need...
  9. U

    BBC Radio 4: Children with ME

    I think there were some real nuggets in the programme. The doctor Phil Hammond who works in EC's clinics admitted that the medical profession when he was training, viewed CFS/ME as Yuppie flu and a result of people feeling they were not achieving what they had hoped for in life. He expressed...
  10. U

    BBC Radio 4: Children with ME

    Just listened to the radio 4 programme and sat here in tears. It's so sad how misunderstood this illness is. I thought the tone was really good and sounded hopeful that PACE was on its knees and NICE may be revised. Well done to all involved.
  11. U

    Crawley: How to deal with anti-science BRS2017

    Looks like it is part of Magenta- with help from specialist physio Jackie Young is currently the Operational Lead for Community Paediatric Physiotherapy and has been qualified as a physiotherapist since 1983. She specialised in paediatrics in 1992 working in Newcastle community paediatric...
  12. U

    BBC interview with Ron Davis

    I am aware of a family that were facing CFS related child safeguarding issues being interviewed for BBC radio 4 this week. If its the same reporter I am encouraged the tide may be turning.
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    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    A very warm welcome to the UK. We need all the open minded, compassionate intelligent discussion we can get about this illness after all the recent MUS/Muppets malarkey here. I hope they get a chance for some more sight seeing x
  14. U

    Dr Naviaux's Suramin & Autism Trial - publication and interview

    I just keep thinking how devastating for the families to see the effects wear off and not be able to get access to this drug. Have to try and stay optimistic that this may be one more piece of the puzzle.
  15. U

    B12 Supplement with both Adeno and Methyl B12?

    My son is using the same oil and uses one squirt a day so the bottle lasts just over 6 weeks. Had a noticeable affect within 4 days on cognition and concentration so I'm loathe to stop it in case! I ordered one and was so pleased I ordered 3 the next time to get the discount. We have had no...
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    Transdermal B12 oils

    Dr Myhill does a B12 oil that is cheaper but I have no idea how good it is or what absorption rate is in comparison. I am buying Gregs oils at the moment for my son but agree it is very expensive to bring in to the UK. Maybe try Dr Myhills...
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    Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

    Result -at least in acknowledging the inappropriate title. Sadly though I imagine this will be discussed at the meeting today as "see what I mean" about these militant difficult patients and their carers trying to thwart progress. I'm heartened by the support shown in the community and fully...
  18. U

    Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

    I am just waiting for an assessment by Exeter paediatrics for my daughter who has chronic pain after a minor injury last year that has escalated into severe unexplained pain . Also son has CFs and has been seen by both Dr street and Dr Crawley who will be at the meeting. Guess we might be a case...
  19. U

    Meaty salty fatty food - immediate improvement?

    Grated carrot/tomato sauce- I would be ecstatic! No vegetable zone for my son- apart from baked/roasted potato- wont even eat chips- who doesn't like chips?. I so understand the fussy eating issues. We tried everything over the years even hypnotherapy and got some improvement from seeing a...
  20. U

    Meaty salty fatty food - immediate improvement?

    I don't understand the reason but my son is exactly the same about meaty/salty food. Very restricted diet even pre CFS by his due to his dislike of many foods but his go to food is bacon, sausage and breadcrumbs chicken in parmesan. Don't tell him about the parmesan though as he doesn't like...
  21. U

    Crawley: How to deal with anti-science BRS2017

    The UK parents who find themselves falling down the CFS rabbit hole and search for the "expert" in the field. Then fight their way to get a referral, wait hopefully for months for someone to understand, start the program then 12 months later realize it doesn't work and no one on the team wants...
  22. U

    HMB to prevent muscle wasting and improve wound healing

    Quiet day maybe- looks very interesting to me
  23. U

    Sunblock factor 50 available in UK -anyone found one that works on very sensitive skin?

    Ultra Sun is very good. Recommended to me by a skin cancer specialist after I had a malignant melanoma- (all clear at the moment) One application per day worked even in Florida sun. It is a bit hard to rub in and needs to be done 20 mins before you go out into the sun. I got it on Amazon UK...
  24. U

    Recording of Esther Crawley inaugural lecture on February 24

    This is part of the reason for the stats about recovery. I believe there are many more that don't recover but drop out of view either because moved out of pediatric services or leave or are pushed out because not improving as expected under the increase regime. Glad you found this thread- did...
  25. U

    Newbie

    Hi Julie I'm not in your area but there seems to be a thriving ME North East group on Facebook. Chester Le Street- don't know how far away this would be. It is nice to meet others face to face if you can but lots of friendly people on here if you can't. Best wishes
  26. U

    Countess of Mar joins Dr Myhill's campaign for a Public Inquiry into medical abuse of ME sufferers

    Just checked the date on this but no- we are well past 1 April. Surprising list of supporters.
  27. U

    DWP call ME/CFS a mental health condition

    They don't know how to deal with the complexity of CFS in the benefits system. At least they are admitting to not understanding it and sitting on the fence that it could be a combination of physical and mental issues. I know many parents have recently had problems with their kids claims and had...
  28. U

    How can I do nothing

    Hi- Have you tried audio books- can be restful and help the boredom. You tube reigns in this house for the lying down hours. Not sure I get the watching other people play games but seems to entertain my 16 year old. He started off with very limited screens but there is a difference for him...
  29. U

    How to improve getting up in the morning?

    I would love to get an answer to this. Its difficult to understand why the time of day makes such a difference. I feel my son would not wake up on his own until after midday if left to his own devices. We have tried for 2 years to change his waking time but it just keeps resetting back to...
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    Brave Sir Prof Wessely discusses death threats 29th March 2017

    SW: 'they changed the recovery measures because they realised they had gone too extreme and they would have the problem that nobody would recover' What a shame they didn't do the right thing and report that fact. It would save the NHS a lot of money on CBT/GET therapies. They realised no one...