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Page 9 of 28
  1. It's M.E. Linda
    Post

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    How people with Long Covid are now also struggling to get clinicians to understand the use of language to describe chronic & multiple symptoms:...
    Post by: It's M.E. Linda, Apr 15, 2021 in forum: General ME/CFS news
  2. It's M.E. Linda
    Post

    UK: Webinar: Catherine Hale & Dr Anna Ruddock, discuss the emancipatory disability research of the Chronic Illness Inclusion Project, Fri, 9 April 21

    It was excellent. Screenshots are to be made available, if we are allowed to share, I will post them here.
    Post by: It's M.E. Linda, Apr 10, 2021 in forum: Advocacy Projects and Campaigns
  3. It's M.E. Linda
    Post

    ME Awareness Day / Week / Month, May 2021

    #MillionsMissing Gloucester (UK) will be ‘missing’ in May 2021, same as 2020 However..... [MEDIA]
    Post by: It's M.E. Linda, Apr 10, 2021 in forum: Advocacy Projects and Campaigns
  4. It's M.E. Linda
    Post

    Is ME/CFS seen as a risk/priority group in the vaccination against sars cov 2 in your country?

    UK: please encourage all friends with ME who have had COVID-19 to complete this survey. #ME Action want to use it as evidence to show the...
    Post by: It's M.E. Linda, Apr 9, 2021 in forum: General disability topics and advocacy
  5. It's M.E. Linda
    Post

    Webinar: Centre for Welfare Reform: Improving Policies for Welfare & Work with Energy Limiting Chronic Illness, 27th April 2021, 11am UK

    Nearly fell over, with fright. The invitations say 12:00 London time (BST) “Topic: CHMEH seminar series: Energy impairment and disability...
    Post by: It's M.E. Linda, Apr 9, 2021 in forum: Advocacy Projects and Campaigns
  6. It's M.E. Linda
    Post

    Recruiting: ME Research UK: Investigating sensory processing and cognitive function in people with ME: a pilot study

    I have found this too [MEDIA]
    Post by: It's M.E. Linda, Apr 4, 2021 in forum: Recruitment into current ME/CFS research studies
  7. It's M.E. Linda
    Post

    Recruiting: ME Research UK: Investigating sensory processing and cognitive function in people with ME: a pilot study

    Update April 2021: Volunteers are still required for the study but need to be able to get to Oxford Brookes because of the equipment. Research...
    Post by: It's M.E. Linda, Apr 4, 2021 in forum: Recruitment into current ME/CFS research studies
  8. It's M.E. Linda
    Post

    UK: Perspectives on Long COVID and work - Online Summit, March 29th, 2021, 2:00 PM to 4:45 PM

    There are good MP advocates for constituents with MECFS (of all parties) around. If you are at all able to join up with any other PwME in your...
    Post by: It's M.E. Linda, Mar 31, 2021 in forum: Long Covid news
  9. It's M.E. Linda
    Post

    UK House of Lords/ House of Commons Questions

    @ladycatlover it would be excellent if you (or someone on your behalf) could ask Kim to please lobby Matt Hancock direct on the postcode lottery...
    Post by: It's M.E. Linda, Mar 15, 2021 in forum: General ME/CFS news
  10. It's M.E. Linda
    Post

    A general thread on the PACE trial!

    I realise it’s a strange link to provide for you @dave30th , but it provides the right flavour as to why Lord/ Prof Robert Winston is so well...
    Post by: It's M.E. Linda, Feb 27, 2021 in forum: Psychosomatic research - ME/CFS and Long Covid
  11. It's M.E. Linda
    Post

    A general thread on the PACE trial!

    My first choice would be to ignore this side-sweep at patients with ME/CFS. Perhaps not many people will have heard his speech. But yet again,...
    Post by: It's M.E. Linda, Feb 26, 2021 in forum: Psychosomatic research - ME/CFS and Long Covid
  12. It's M.E. Linda
    Post

    What symptoms of ME that you personally experience is (a) not shown on your medical file and/or (b) not in the ME literature.

    Great thread @Andy Just today (whilst chasing the GP surgery about whether my email regarding Group 6 vaccine had actually been received on 7 Feb...
    Post by: It's M.E. Linda, Feb 15, 2021 in forum: General and other signs and symptoms
  13. It's M.E. Linda
    Post

    ExFACTR Study: Exploring the Feasibility of ACT for Children and young people with CFS/ME ... in prep. for an RCT. Crawley et al. Recruiting Jan 2021

    I would also query the mention only of the 2007 Guidelines. Surely, ethically, the study should advise participants (especially under...
    Post by: It's M.E. Linda, Feb 15, 2021 in forum: Psychosomatic research - ME/CFS and Long Covid
  14. It's M.E. Linda
    Post

    ExFACTR Study: Exploring the Feasibility of ACT for Children and young people with CFS/ME ... in prep. for an RCT. Crawley et al. Recruiting Jan 2021

    http://www.bristol.ac.uk/academic-child-health/research/research/cfsme/exact-study/ In this link it says: “This has informed the subsequent...
    Post by: It's M.E. Linda, Feb 15, 2021 in forum: Psychosomatic research - ME/CFS and Long Covid
  15. It's M.E. Linda
    Post

    "No More Mr NICE Guy…" by Prof. Brian Hughes

    I have just gone on to check. I can still read @Brian Hughes tweets but a message says that ‘certain sharing is restricted on a Protected...
    Post by: It's M.E. Linda, Feb 15, 2021 in forum: General ME/CFS news
  16. It's M.E. Linda
    Post

    When is post viral illness PVFS and when is it ME/CFS? Discussion.

    I have got used to describing my first brush with chronic illness as “Post Viral Fatigue” (2001 - viral onset, housebound, 6 months, before very...
    Post by: It's M.E. Linda, Feb 12, 2021 in forum: Diagnostic Criteria and Naming Discussions
  17. It's M.E. Linda
    Post

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Hour long video/podcast where they both acknowledge the help and assistance that has been given to Long Covid patients by the ME/CFS community....
    Post by: It's M.E. Linda, Feb 11, 2021 in forum: Long Covid news
  18. It's M.E. Linda
    Post

    What research do you want to see? (study ideas)

    I would also vote for this study to be replicated - it really resonated with my experience. And/or this one:...
    Post by: It's M.E. Linda, Feb 9, 2021 in forum: General Advocacy Discussions
  19. It's M.E. Linda
    Post

    Numeric Rating Scales Show Prolonged Post-exertional Symptoms After Orthostatic Testing of Adults With [ME/CFS], van Campen et al, 2021

    I have mentioned my experience of a Tilt Table Test before, in other threads. I saw the Consultant, had the tilt table procedure and a follow up...
    Post by: It's M.E. Linda, Feb 7, 2021 in forum: ME/CFS research
  20. It's M.E. Linda
    Post

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    @Kitty , she is already aware of the draft guidelines :thumbsup: The comment re Bath cfsme Clinic related to the LongCovid clinics, now being...
    Post by: It's M.E. Linda, Feb 3, 2021 in forum: Long Covid news
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