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  1. Suffolkres

    Low dose hydrocortisone as a treatment for ME/CFS

    Adrenal extract? like Nutri?
  2. Suffolkres

    Low dose hydrocortisone as a treatment for ME/CFS

    Not really for many complicated reasons. https://stopthethyroidmadness.com/safe-uses/ "5) Why should most physicians be unaware of the safety of small physiologic dosages? 1. There has been no promotion of physiologic dosages by pharmaceutical companies. 2. There has been little, if any...
  3. Suffolkres

    Low dose hydrocortisone as a treatment for ME/CFS

    Likewise this summary Safe Uses of Cortisol https://stopthethyroidmadness.com/safe-uses/ NB Family member underwent "gold standard" NHS testing before embarking on both adrenal and thyroid alternative testing in Metabolic practice. The alternative testing identified a clinically significant...
  4. Suffolkres

    Low dose hydrocortisone as a treatment for ME/CFS

    I have found this quite measured and useful https://www.goodreads.com/book/show/1654687.Safe_Uses_of_Cortisol William McK. Jefferies was an endocrinologist who first became interested in the effects of cortisol while training under a pioneer in the study of adrenocortical function. During his...
  5. Suffolkres

    Low dose hydrocortisone as a treatment for ME/CFS

    I am refering to about 10-15mg max per day. This is contrary to what we found here. I disagree, as Endocrine clinics are swamped dealing with diabetes and don't locally seem interested in more 'peripheral' conditions. Luckily and unusually for us, the GP is very supportive.
  6. Suffolkres

    Low dose hydrocortisone as a treatment for ME/CFS

    Very low doses (physiological rather than pharmacological) are not thought to suppress the adrenal glands. If that were to be the case, allergy treatments could also suppress (inhalers, creams etc). Low dose HC did deal with other problematic allergic conditions like ecthma, asthma and...
  7. Suffolkres

    Low dose hydrocortisone as a treatment for ME/CFS

    This is worth a revisit and is something which I have followed since 1999. I know it's old but we as a family have followed this treatment since 1999 and it's approach and are revisiting it. We are lucky to have a pragmatic open minded GP who supports the approach...
  8. Suffolkres

    Hand grip strength as a clinical biomarker for ME/CFS, 2018, Nacul et al

    Don't forget that this team also have been involved in evaluation of MS against ME ( Norfolk/Suffolk/London) - published this recently. https://link.springer.com/article/10.1007/s41669-018-0071-6 Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome...
  9. Suffolkres

    David Tuller: Trial By Error: How to Avoid Ethical Review

    This is a little off topic but related! It follows discussion on S4ME as Parliament say, "in another place...". I uncovered some interesting info whilst looking up the RCP /RSM stuff to do with the event I attended at the RSM last year. Additionally, I think MEA and Charles have used RSM and...
  10. Suffolkres

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    Yes, I can say the restaurant is rather good. I went to a lecture there this time last year triggered by the Soil association who has one of the RSM notaries as a Trustee.... President of the Epidemiology and Public Health Section of the RSM The lecture, pesticides and food, had some very...
  11. Suffolkres

    Information about NICE committee members

    https://www.medical.theclinics.com/article/S0025-7125(14)00028-5/fulltext Article Outline Key points Case 1: Ms D Introduction Definitions Pathophysiology Symptoms Case 2: Ms L Diagnostic testing/imaging studies Differential diagnosis Case 3: Mr C Management Future considerations/summary...
  12. Suffolkres

    Hand grip strength as a clinical biomarker for ME/CFS, 2018, Nacul et al

    Source: Frontiers in Neurology Preprint Date: November 5, 2018 URL: https://www.frontiersin.org/articles/10.3389/fneur.2018.00992/abstract Hand grip strength as a clinical biomarker for ME/CFS and disease severity ---------------------------------------------------------- Luis C. Nacul(*)...
  13. Suffolkres

    UK - Discussion of how many patients use NHS ME/CFS clinics

    The stats are released by the provider ( East Coast Community Health) to the Commissioning and Contacts team who copy us in- under out Terms of Reference, we are the Service Development and Implementation patient/carers on the Working Group overseen by Healthatch (allegedly). Dr. Terry...
  14. Suffolkres

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    So it was definitely worth the phone call to the RCP lady on the day of the interviews it seems..... Great news!
  15. Suffolkres

    UK - Discussion of how many patients use NHS ME/CFS clinics

    Our persistence and complaints +pressure has resulted in the service now doing 15-20 domiciliary visits a month rather than 34 a year. Terry Mitchell in 2006 was seeing 20% of all referrals as domiciliary. The clinic focused on the severely affected and complex cases. Not the HOD but the NOD...
  16. Suffolkres

    The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

    I agree entirely , it the proverbial "sheep" and "goats' all lumped together; Me?CFS/ vague "fatiguers"........ Likewise EC and the school children with a "diagnosis"- some who "respond" to LP as they do not have ME! They are "lumpers" we are "splitters".....
  17. Suffolkres

    The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

    Barbieloo‏ @BarbR666 3m3 minutes ago Replying to @b_m_hughes International Practitioner Health Summit 2018 The Wounded Healer - S Stevens, Chief Exec NHS England http://php.nhs.uk/ S Wessely President RCM C Gerada Medical Director at NHS PHP Wonder if missive (Grunidian) is part of an...
  18. Suffolkres

    The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

    https://kclpure.kcl.ac.uk/portal/kimberley.goldsmith.html Dr Kimberley Goldsmith Senior Lecturer Dr Kimberley Goldsmith Research interests My main research focus is mediation of the effects of psychotherapeutic treatments in clinical trials. This is part of a wider interest in studying causal...
  19. Suffolkres

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    At the end of the day, any "arms length " non government department will bow to others in the pecking order of NGD- NHS England, NHS Improvements and NHS Public Health- it will respond to their priority list which is IAPT etc for long term chronic physical conditions...........it's all a...
  20. Suffolkres

    NICE to update guidelines for MS - Oct 2018

    IAPT £££££££ here we come........
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