• Welcome to Phoenix Rising!

    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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Search results

  1. Skycloud

    Dr David Tuller: NICE Draft Rejects GET, Lightning Process, and CBT-As-Cure

    Other people are better placed than me to provide balanced perspective, I was just sharing the little bit I’ve learnt about NICE. I worry about being left out in the dark too, I would like my life back! in my opinion yes we need to raise further awareness, but I think that the most benefit...
  2. Skycloud

    Dr David Tuller: NICE Draft Rejects GET, Lightning Process, and CBT-As-Cure

    Looks like I’ve mucked up the thread with my editing - sorry everyone. I have bad cognitive issues due to ME and got in a muddle. I won’t bother moving text to the other thread. @Bronc I completely agree with your last post. I’m not sure if you misunderstood me? If you did let me be clear...
  3. Skycloud

    Dr David Tuller: NICE Draft Rejects GET, Lightning Process, and CBT-As-Cure

    I understand your frustration and disappointment, and there is much we need. However the remit of NICE is very specific and limited and it just doesn’t include some of the things you want to see. For example, t’s not the job of NICE to produce proposals for education, and the committee do not...
  4. Skycloud

    Weird ridges on fingertips, anyone else?

    I have these wrinkles on my fingertips too. They appeared after I’d had ME for nearly a decade. I’ve only had them for the last four or five years. My mum has them too. She has had them for decades with nothing wrong with her. Totally healthy apart from usual colds. She’s in her mid seventies...
  5. Skycloud

    Why is the UK so barbaric when treating ME

    It's difficult having these conversations because the issues are many and complex. I appreciate hearing different perspectives
  6. Skycloud

    Why is the UK so barbaric when treating ME

    One point about the NHS - though there is a lot wrong in the UK for people with ME, our socialised NHS system is good generally (and very often very good indeed, first class) when funded as it should be. The NHS is cost effective. The current and last government have a policy of austerity, which...
  7. Skycloud

    Clumsiness

    I hope you settle in well in your new home @ewmkiki and good luck with the new doctor.
  8. Skycloud

    ME/CFS - Study Suggests It's Worse than Multiple Sclerosis: Authors Call For More Funding

    I agree with this. However, this research team are biomedical researchers who are not switching outcomes etc so taking the subjectiveness into account I think it's still useful. We can expect more research from the UK ME/CFS Biobank team in the future. I think they're doing a genetics study...
  9. Skycloud

    Clumsiness

    Hi @ewmkiki. What you describe does sound like an ME thing, but if you've not discussed it with your GP I think you should because a neurologist referral may be needed to rule out other things if you haven't already seen one. How frustrating to have cereal all over your laundry!
  10. Skycloud

    Where did everyone go??

    I look in on both Phoenix rising and Science for ME forums regularly. I'm spending more time on the other at the moment as there are interesting developments on PACE and refuting BPS front and good detective work being done that will in my opinion make a difference. The sciencey discussions...
  11. Skycloud

    Watching Unrest again, I'm noticing something.

    Not exactly but perhaps related: During the first 6 years or so I used to get a spasm/cramp of the base of the thumb on my right hand. It would intermittently draw my thumb very tightly across my palm and would have to be pulled back to a normal position. It would immediately return across my...
  12. Skycloud

    Petition: Appeal to NICE concerning the Guideline Committee for ME/CFS

    Yes; I'm looking forward to some new research being published!
  13. Skycloud

    Petition: Appeal to NICE concerning the Guideline Committee for ME/CFS

    I hope you are right; we are in with a chance of achieving this. However, the arguments against PACE aren't fully accepted yet in the UK and there will be an incentive to retain GET and CBT in some form given the investment in specialist clinics so far, paltry as it is; and the philosophy behind...
  14. Skycloud

    Petition: Appeal to NICE concerning the Guideline Committee for ME/CFS

    The influence of the NICE guidelines has an international reach with many other countries either basing their own guidelines on NICE or adopting it wholesale. GET and CBT are no longer recommended by the NIH in the USA; let's knock down another pillar!
  15. Skycloud

    What resources can UK students expect as part of reasonable accommodations?

    @desertangel - I'm really pleased your university are now taking this seriously; I hope you will be in your new dorm soon. Well done and best wishes with your studies!
  16. Skycloud

    What resources can UK students expect as part of reasonable accommodations?

    good advice @boombachi - I didn't now about the disability rights uk helpline for students; I'll remember that one. One other thing that may be useful, @desertangel, try talking to your university student union representative and see what comes from that - I'm thinking they should be prepared...
  17. Skycloud

    Prayer Requests & Praises for Nov/Dec

    Amen! Happy New Year everyone, may we all follow our Lord Jesus more closely in 2018. Praying for improved health; patience and strength to bear what we must, and peace in our hearts that makes a difference not just to ourselves but others too. S xx
  18. Skycloud

    What resources can UK students expect as part of reasonable accommodations?

    It's a real shame that you haven't had any other responses, @desertangel. Have you been in touch with the MEAssociation? Any help? Try The Tymes Trust (The Young M.E. Sufferers Trust) too - they specialise in supporting children and young people with ME upto the age of 26 with their care and...
  19. Skycloud

    What resources can UK students expect as part of reasonable accommodations?

    Hi @desertangel, I'm sorry you're going through this. I would hope that you can work with the disability coordinator to make things easer for you. If you haven't already I would suggest that you contact the ME Association and explain the problem you are having to see what advice or support they...
  20. Skycloud

    'Ask Me Anything'! UK ME/CFS Biobank 14th December 2017

    The UK ME/CFS Biobank team represented by Project Lead & Clinical Lecturer, Dr Eliana Lacerda, Co-Principal Investigator Dr Luis Nacul, Research Nurse & Biobank Coordinator Caroline Kingdon and Project Manager (Administrative & Financial) Jack Butterworth took part in an Ask Me Anything...
  21. Skycloud

    The UK ME/CFS Biobank Christmas Appeal 2017!

    Do you live in the UK? Would you like to take part in biomedical research into ME? The UK ME/CFS biobank are looking for people to provide samples. http://cureme.lshtm.ac.uk/participants/
  22. Skycloud

    The UK ME/CFS Biobank Christmas Appeal 2017!

    Today's total: £8,973.14
  23. Skycloud

    The UK ME/CFS Biobank Christmas Appeal 2017!

    £8,813.14 If you haven't already, please donate. Your donation will make a real difference.
  24. Skycloud

    The UK ME/CFS Biobank Christmas Appeal 2017!

    Today's total : £8,613.14 raised News from the UKMEB website: http://cureme.lshtm.ac.uk/biobank-samples-received-dr-karl-morten/
  25. Skycloud

    The UK ME/CFS Biobank Christmas Appeal 2017!

    Update: https://www.facebook.com/mecfsbiobank/posts/1610366352344135
  26. Skycloud

    The UK ME/CFS Biobank Christmas Appeal 2017!

    Please support biomedical research into ME in the UK Help the uk ME/CFS biobank at the London School of Hygiene and Tropical Medicine raise £25,000!! £8,513.14 raised so far This money is needed to -- Release samples to researchers around the world, searching for the biomarkers of ME/CFS...
  27. Skycloud

    Prayer Requests & Praises for Nov/Dec

    Cause for praise! - I'm doing better than my fears having now been away from home for a week. I will probably be able to go home in 3 days as it's taken longer than originally thought. That will probably be tiring, but I can rest after that. Not so many stairs - Someone gave up their room for...
  28. Skycloud

    No pip

    Hi @nokmax76 The information you've posted will probably be useful for a lot of people - if you haven't already making a thread for it to bring it to wider attention might be a good idea. Sorry if you have already, I've not checked due to energy levels.
  29. Skycloud

    Spiritual Resources: Sermons, articles, books, music, etc.

    Thank you @Countrygirl :) edit to add - @Countrygirl - I hadn't heard of David Pawson so it's been interesting and I've been working my way listening through his interviews on GOD-TV. Thanks again
  30. Skycloud

    No pip

    You're very welcome! As I said, my sister had 2 different experiences with their advisors/advocates as to how helpful she found them. I'm glad they gave you a contact number for help with the Tribunal if it should come to that. (Hopefully it won't, but for many it does. Fingers crossed!!) I...