• 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. A

    Dr David Tuller: After Maeve Boothby O’Neill’s Death, More Concerns About Severe ME Patients at NHS Hospitals

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    No signs of neuroinflammation in women with chronic fatigue syndrome or Q fever fatigue syndrome using the TSPO ligand [11C]-PK11195, 2021

    From paper The Japanese study included 30 to 40% males but did not report results separately. Inflammation is more prevalent in male mice models Illness duration was longer than japanese study so inflammation may have been related to viral activity? Did they control for stage in menstrual...
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    Paul Garner in BMJ

    If you read back his blogs, the language in the latest one is entirely different . Latest LP convert ?
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    Research update from Prof. Ron Davis (video!)

    In UK, ME / CFS recognition and issues are far from robust all we have are cognitive therapies . Here the shoe is on the other foot re ME/ CFS and CRF .
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    Thermoregulation and body temperature

    My daughters limbs are always freezing ( very weirdly her knees are colder than thighs and calves ) , I had put this down more to OI issues than central thermostat. She often complains that the cold is " inside", in her bones. Even in a warm bath they don't heat up. I don't kn8w that she...
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    Dr David Tuller: With Trump Out, Can GET/CBT Be Next?

    Link to draft guideline and consultation docs https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents
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    Homocysteine testing

    My daughter had homocysteine testing. I argued the case as we have a family history of heart issues and MTHFR SNPs. It is not a " normal" GP test so we had to get it to the hospital lab within 30mins of blood draw to get centrifuges. It came back low normal, so looks like MTR and MTRR SNPs...
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    Updates on ICD-11 and other classification and terminology systems

    Amazing result. Thank you for your perseverance
  9. A

    Dr David Tuller: Fiona Godlee Doubles Down on Lightning Process Study

    Eminence trumphs evidence yet again.
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    Any recent ME/CFS outbreaks?

    In 1950s UK unmarried nurses ( especially if still training) stayed in nurses accommodation , usually at/ near hospital, which may have similar environmenral triggers/ acted as a secondary incubator. How many of the affected nurses lived in nurses accommodation.
  11. A

    The RBC-NOX hypothesis

    Cell d Cell danger response
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    IDO Metabolic Trap Hypothesis Published Today

    Would also implicate hormone balance - seratonin / melatonin/ estrogen
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    If your children have ME...

    Sending hugs @perrier
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    If your children have ME...

    A child with ME forces you to reconsider all aspects of life. My daughter is a teenager and is stuck at age 14 ( now 18). Others have moved on with exams, learning to drive, first holidays without mum and dad, prom , college and uni: we cannot access education. Finding beauty in small things...
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    If your children have ME...

    Tagging @perrier
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    IDO Metabolic Trap Hypothesis Published Today

    How would this effect high estrogen as I understand serotonin can act as a signalling molecule to impact estrogen' a effects re pain modulation, immune function, vasodilation ...
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    The RBC-NOX hypothesis

    https://elifesciences.org/articles/49682
  18. A

    More confirmation on the importance of B2 in methylation

    I don't know too much re methylation, but would suspect- Low methionine , low SAMe ( so prioritising of methyl donor function) , low glutathione. The body has many feedback loops, so this will be overly simplistic....and perhaps wrong. @Learner1 ?
  19. A

    Premenstrual itchy skin

    Low estrogen ( itchy skin can be a menopausal issue too when estrogen tanks) Typically estrogen is at its lowest just before your period. https://www.skintolivein.com/psoriasis-and-urticaria/is-your-skin-acting-hormonal-how-hormone-changes-impact-your-skin/
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    Genova NutrEval test - is it accurate?

    @Learner1
  21. A

    The RBC-NOX hypothesis

    Fascinating. Thank you @necessary8 My aunt and daughter both have ME. Both have SNPs which if expressed would affect NO levels . Could this be a fine tuning mechanism ?
  22. A

    IDO Metabolic Trap Hypothesis Published Today

    Have genetic impacts on NO therefore been looked at?
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    Royal Colleges instruct GPs to use GET with ME patients July 2019

    Who are the HANDI group, what are their interests ? Timing of this piece is interesting. As is the piece on " social media activists" which references 3 Kate Kelland articles. There is much at stake if people look deeper at the efficacy and harms of GET and CBT - the whole UK ( and wider?)...
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    MicroRNAs as biomarkers of pain intensity in patients with chronic fatigue syndrome (Al Rawaf, 2019)

    How did they test pain thresholds ( as opposed to pain tolerance) Is this not normally a physical pinprick type test? If no objective test then it suffers from the usual bias and difficulties of pain comparison over time. If this is self report questionnaire, how do you adjust for pain "...
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    Few physical differences found between healthy individuals and those afflicted chronic fatigue syndrome (sciencenordic.com)

    The lack of testing done reflects the lack of testing parameters available in many countries.
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    Few physical differences found between healthy individuals and those afflicted chronic fatigue syndrome (sciencenordic.com)

    The fact that the diagnosis criteria identify so few with ME/ CFS, yet this is generalised, and that much of this was done via self report questionnaires says much for the quality of research. Of interest though is the fact that the NHS is being quoted rather than a reference to PACE.
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    Dr Amolak Bansal still practicing?

    From a parent's forum i know of 2 who have had consultations, one did this via skype and found it helpful - no way they could travel. I have a feeling skype will be the same timeframe but that the first consultation will be in person if possible. Both people found it helpful.
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    Heart palpitations

    My aunt is severely affected and had horrendous issues with heart palpitations. Twice ended up in A&E but nothing found. Magnesium injections have helped .
  29. A

    Dr Amolak Bansal still practicing?

    I think you go through referral process and agree skype as preference. He does appreciate that many cannot travel. I know someone who does this and will see if i can find out for you.
  30. A

    Dr Amolak Bansal still practicing?

    He does skype consultations too