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Science for ME

  1. Welcome to Science For ME

    About the forum. Members can access our rules, guidance on using the forum and a section where members can introduce themselves.

    1. Welcome: About the Forum, Our Values

      Discussions:
      1
      Messages:
      1
      Latest: Welcome Science For ME, Apr 19, 2022
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  2. ME/CFS and Long Covid news

    A place to discuss news about ME/CFS and Long Covid.

    1. ME/CFS and Long Covid news

      A place to discuss news about ME/CFS and Long Covid.

      Discussions:
      2,795
      Messages:
      83,374

      1. General ME/CFS news

      2. ME/CFS research news

      3. Long Covid news

      4. Psychosomatic news - ME/CFS and Long Covid

      5. Regional news

      6. News from organisations

      7. Weekly ME news in brief

      Latest: Long Covid in the media and social media 2022 rvallee, Oct 4, 2022 at 7:50 PM
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  3. ME/CFS and Long Covid research

    A place to discuss specific research papers for ME/CFS and associated illnesses such as Long Covid. Each thread should be about a single research paper.

    1. ME/CFS and Long Covid research

      A place to discuss specific research papers for ME/CFS and associated illnesses such as Long Covid. Each thread should be about a single research paper.
      Discussions:
      2,607
      Messages:
      38,106

      1. ME/CFS research

      2. Long Covid research

      3. Psychosomatic research - ME/CFS and Long Covid

      4. Recruitment into current ME/CFS research studies

      Latest: Ongoing long covid studie Sweden: Utvärdering av effekten av hjärnträningsmetoder hos long covid patienter” Peter Trewhitt, Oct 4, 2022 at 8:04 PM
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  4. Other news and research

    A place to post and discuss other news and research relevant to people with ME/CFS

    1. Other news and research

      A place for other health-related news and research. 'Conditions related to ME/CFS' includes IBS, POTS, fibromyalgia, post-treatment lyme disease, Gulf War Illness. 'Other Psychosomatic Medicine' covers approaches to diseases other than ME/CFS and Long Covid based on a psychosomatic paradigm - these often refer to illness labels such as Medically Unexplained Symptoms (MUS) and functional disorders (e.g. Functional Neurological Disease).
      Discussions:
      4,437
      Messages:
      35,633

      1. 'Conditions related to ME/CFS' news and research

      2. Other psychosomatic news and research

      3. Research methodology news and research

      4. Other health news and research

      5. Epidemics (including Covid-19, not Long Covid)

      Latest: Cognitive Behavioural Therapy to Optimize Post-Operative Fracture Recovery (COPE): Protocol for a Randomized Controlled Trial, 2022, Busse et al Hutan, Oct 4, 2022 at 7:56 PM
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  5. Resources

    1. Resources

      Discussions:
      63
      Messages:
      472

      1. Resources

      2. Science library (Read only)

      3. Training courses

      Latest: Useful resources for the interpretation of genetic tests and data strategist, Aug 28, 2022
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  6. Advocacy and Fundraising

    A place to discuss advocacy and fundraising related to the ME/CFS community

    1. Advocacy

      Discussions:
      902
      Messages:
      17,152

      1. Advocacy Action Alerts

      2. General Advocacy Discussions

      3. General disability topics and advocacy

      4. Advocacy Projects and Campaigns

      5. Petitions

      6. Fundraising

      7. Open Letters and Replies

      8. MEpedia

      Latest: Survey: EFNA: Assessing diagnosis and care pathways of people living with neurological disorders in Europe, closes 19th April 2022 Andy, Oct 4, 2022 at 5:57 PM
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  7. Guidelines, reviews and disease coding

    This section is for guidelines, reviews and coding with public consultation processes for ME/CFS and similar and related illnesses. Scientific papers about guidelines and reviews should be posted in the Research section.

    1. ME/CFS related guidelines, reviews, disease coding

      'Guidelines, reviews and coding for ME/CFS and similar illnesses - development and discussion This section is for guidelines, reviews and coding with public processes for comment. Scientific papers about guidelines and reviews should be posted in the Research subforums.'
      Discussions:
      97
      Messages:
      10,111

      1. Disease coding

      2. 2021 Cochrane Exercise Therapy Review

      3. 2021 USA CDC ME/CFS Diagnosis and Treatment Review

      4. 2020 UK NICE ME/CFS Guideline

      5. 2020 UK NICE Long Covid Guideline

      6. Other guidelines

      7. Other reviews with a public consultation process

      Latest: UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion Dolphin, Oct 3, 2022 at 5:54 PM
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  8. Discussion topics

    1. Research quality and methodology discussions

      Discussions:
      96
      Messages:
      1,994

      1. Laboratory and genetic testing, medical imaging

      2. Physical testing (e.g. CPET, actimetry)

      3. Subjective outcome measures (questionnaires)

      4. Trial design including bias, placebo effect

      5. Other research methodology topics

      Latest: Identifying and managing problematic trials: A research integrity assessment tool for RCTs in evidence synthesis, 2022, Weibel, Garner et al rvallee, Oct 2, 2022 at 10:59 PM
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    2. Causes, Epidemiology, Criteria, Naming discussions

      Discussions:
      46
      Messages:
      1,605

      1. Possible causes and predisposing factor discussion

      2. Diagnostic Criteria and Naming Discussions

      3. Epidemiology (incidence, prevalence, prognosis)

      Latest: Percentage of people with ME/CFS able to work or attend school Peter Trewhitt, Oct 1, 2022 at 2:46 AM
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    3. Symptoms and signs discussions

      Discussions:
      447
      Messages:
      9,309

      1. General and other signs and symptoms

      2. Post-Exertional malaise and fatigue

      3. Pain and Inflammation

      4. Sleep Disturbance

      5. Cardiovascular and exercise physiology (CPET)

      6. Orthostatic intolerance

      7. Neurological/cognitive/vision

      8. Blood (e.g. coagulation, cell stiffness)

      9. Immunological

      10. Hypersensitivity and Intolerance Reactions

      11. Gastrointestinal and Urinary

      12. Cellular (mitochondria, metabolites, cytokines)

      Latest: The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS Andy, Oct 4, 2022 at 1:04 PM
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    4. Treatment discussions

      A place to discuss treatments for ME/CFS and related conditions, excluding psychosomatic treatments
      Discussions:
      245
      Messages:
      4,992

      1. Drug and supplement treatments

      2. Orthostatic intolerance treatments

      3. Nutrition, food sensitivity, microbiome treatments

      4. Other treatments

      Latest: Vericiguat [drug for heart failure mentioned by Prof Schiebenbogen] FMMM1, Sep 28, 2022 at 12:54 PM
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    5. Psychosomatic theories and treatments discussions

      A place to discuss theories and treatments based on the assumption that ME/CFS and other illnesses are psychosomatic, caused by false illness beliefs and deconditioning. Topics include PACE trial, CBT, GET, MUS, functional diseases, Lightning Process.
      Discussions:
      36
      Messages:
      1,301
      Latest: UK: Improving Access to Psychological Therapies (IAPT) articles, blogs and discussion bobbler, Sep 28, 2022 at 9:07 PM
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    6. Other specific illnesses discussions

      A place to discuss alternative diagnoses and possible co-morbidities
      Discussions:
      186
      Messages:
      2,815

      1. Fibromyalgia and Connective Tissue Disorders

      2. Infections: Lyme, Candida, EBV ...

      3. Endocrine: Thyroid, Adrenal, Diabetes

      4. Immune: Autoimmune and Mast Cell Disorders

      5. Neurological diseases

      6. Vitamin B12, D and other deficiencies

      7. Gulf War Illness

      8. Other specific illnesses

      Latest: At what point could someone with ME have somatic symptom disorder? RedFox, Oct 2, 2022 at 7:19 PM
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    7. Doctors, clinics and organisations discussions

      Discussions:
      108
      Messages:
      3,406

      1. General clinical care

      2. USA clinics and doctors

      3. UK clinics and doctors

      4. Other clinics and doctors

      5. Organisations relevant to ME/CFS and Long Covid

      Latest: Dr Björn Bragée and the Bragée ME-center in Stockholm, Sweden mango, Oct 4, 2022 at 11:30 AM
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    8. Living with ME/CFS discussions

      Discussions:
      269
      Messages:
      4,910

      1. Home adaptations, mobility and personal care

      2. Relationships and coping

      3. Monitoring and pacing

      4. Work, Finances and Disability Insurance

      5. Caregiver support

      Latest: Best chopping tool/food prep gadget? Haveyoutriedyoga, Oct 4, 2022 at 6:56 PM
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    9. General ME/CFS discussions

      For discussion topics that don't fit any of the named discussion forums.
      Discussions:
      11
      Messages:
      278

      1. General ME/CFS discussion

      Latest: Pain relief and sedation with ME - any issues to be aware of? Sasha, Oct 4, 2022 at 4:47 PM
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