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  1. Nightsong

    [Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

    The uncritical acceptance by BACME and others of "HPA axis" dysregulation bothers me. This is based on small-scale studies with minor findings such as mild hypocortisolaemia and blunted responses to (synthetic) ACTH relative to a control group - but cortisol secretion is pulsatile and the...
  2. Nightsong

    House of Lords: Govt discussions with NICE on ME/CFS (Main Chamber) Tuesday, 12 October 2021

    Very interesting that the vice-chair of the NICE committee, Baroness Finlay, spoke up; her question was most instructive. Firstly, the phrase "through consensus agreement in the committee" suggests that these matters were decided purely on a consensus basis and did not come down to voting...
  3. Nightsong

    Why do BPS proponents keep ignoring the evidence against their ideas?

    It's from Alvarez' 1935 paper "What is wrong with the patient who feels tired, weak and toxic?". I don't think anyone has posted the full, in-context quote from SW's chapter in Psychological Disorders in General Medical Settings before, so I've attached it to this post.
  4. Nightsong

    'A life I can cope with'. An alternative model of cognitive behavioural therapy (CBT) for CFS/ME, Clark et al., 2021

    Abstract Objectives: This study aimed to explore the experience of cognitive behavioural therapy (CBT) aimed at better management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), rather than increasing activity. Design: This was a qualitative study using grounded theory...
  5. Nightsong

    The Atlantic: Long Covid is everyone's problem, 2021, Ed Yong

    a now-discredited study called the PACE trial. It warms my heart to see that in the pages of a major publication.
  6. Nightsong

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    This is an utterly egregious misrepresentation. The evidence was never supportive; a cogent assessment of that evidence showed that its quality was sufficiently low to be unworthy of inclusion in treatment recommendations. I see the author uncritically regurgitates Busse's line. We really need...
  7. Nightsong

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Disappointing, of course, but I'm not worried overmuch about this; the guidance is surely done & will probably be sent to stakeholders for error review within the next few days. Additionally, as per the minutes of 15/03, CS had already been forced to "withdraw from all further meetings" owing to...
  8. Nightsong

    Persistence of SARS CoV-2 S1 Protein in CD16+ Monocytes in Post-Acute Sequelae of COVID-19 (PASC) ..., 2021, Patterson et al (in prep)

    Patterson also seems to have been involved in a group called FLCCC, which produced this "treatment protocol" - he is listed as one of the co-authors - which is full of unevidenced claims about MCAS and ivermectin.
  9. Nightsong

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    The stakeholder responses should be very interesting. In order to respond to the draft, the BPSers will have to seriously engage with the criticisms of CBT and GET, etc, on their own merits for the first time; for decades they've seen engaging as infra dig at best and reinforcing false illness...
  10. Nightsong

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    There's a copy of an older version on archive.org. Comparing the two, the following entries have been deleted: and these have been added:
  11. Nightsong

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

    This just came up in my news feed: https://www.dailymail.co.uk/health/article-9775925/Can-long-Covid-cured-monthly-dose-vaccine.html Dr David Strain (AfME's new medical adviser) is planning a trial to determine if repeated vaccination alleviates the symptoms of long COVID.
  12. Nightsong

    CBT repackaged or a novel treatment? The Lightning Process compared with UK specialist medical care for paediatric [CFS], 2021, Anderson, Parker et al

    The Linbury Trust is one of the trusts established by Lord Sainsbury, and they've had an interest in funding ME research for a very long time. As far back as 1998 they produced a short booklet ("A Research Portfolio on Chronic Fatigue") which contained contributions from many of their grantees...
  13. Nightsong

    [Blog] Beyond the NICE guideline: MEComms© and the case for a public inquiry

    The suggestion of a unified comms & PR strategy seems a very sound one to me. The ME patient community is constantly being blindsided, while the very slick strategy with the SMC as its lynchpin has effectively shaped public & medical opinion and obviously discouraged clinicians and researchers...
  14. Nightsong

    Experience with Lightning Process course 2008, Norway

    As it happens, I was just reading another story from another of the many victims of this reprehensible process. The mendacity and malevolence of Parker and his LP quacktitioners are simply obscene. Encouraging participants to lie to themselves, lie to others, and to disconnect from...
  15. Nightsong

    Passive transfer of fibromyalgia symptoms from patients to mice, 2021, Goebel et al

    From my brief skim, the study seems to be to have been well-conducted, although there is no clinical detail; nothing as to how the patients were selected & diagnosed, so who knows whether these patients meet any diagnostic criteria or whether they are indeed representative of fibromyalgia...
  16. Nightsong

    New Scientist - Long Covid: We have ignored post-viral syndromes for too long, 2021, Le Page et al

    Definitely - and not just Libby. My local council's library service also offers access - remotely, just with a library number - to Borrowbox (e-books), PressReader (newspapers & other publications) as well as Infoweb Newsbank (an archive of tens of millions of news articles dating back decades).
  17. Nightsong

    Predicting post-exertional malaise in Gulf War Illness based on acute exercise responses (Boruch et al., 2021)

    Abstract Aims: Post-exertional malaise (PEM) is poorly understood in Gulf War Illness (GWI). Exercise challenges have emerged as stimuli to study PEM; however, little attention has been paid to unique cardiorespiratory and perceptual responses during exercise. This study tested whether select...
  18. Nightsong

    Post-Exertional Malaise ... Related to Central Blood Pressure, Sympathetic Activity and Mental Fatigue in [CFS] Patients, 2021, Kujawski, Newton et al

    A minor historical point, but if they say it was first used in Fukuda, then they're wrong. This is from Komaroff's contribution to the Jenkins-Mowbray Post Viral Fatigue Syndrome book (1991); there may be even earlier references still...
  19. Nightsong

    Physical activity intensity but not sedentary activity is reduced in CFS and is associated with autonomic regulation, 2011, Newton et al

    A little off-topic, but given that there is topical interest in Newton's opinions re. ME, here are two pages from "Postural Tachycardia Syndrome: A Concise and Practical Guide to Management and Associated Conditions" (published in 2021), where she contributed the chapter about the "associated...
  20. Nightsong

    Physical activity intensity but not sedentary activity is reduced in CFS and is associated with autonomic regulation, 2011, Newton et al

    Attached. Not quite as bad as, say, HADS, but some questions are problematic in the context of ME, particularly those that involve the "I am less motivated" construction, e.g. q21 ("I am less motivated to do anything that requires thinking"). I'm certainly motivated to; my body just won't allow...
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