Search results

  1. R

    Post-exertional symptoms distinguish myalgic encephalomyelitis/chronic fatigue syndrome subjects from healthy controls, 2020, Mateo et al

    "This paper also sheds light on the possible risks of a 2-day CPET. It does not appear that patients or research subjects suffer permanent or protracted damage from CPET. Our data show that recovery is bimodal, with approximately half of subjects taking a week or less to recover." ... I do not...
  2. R

    Long Covid epidemiology (prevalence, incidence, recovery rates)

    The number of people in the UK with severe post-covid fatigue right now likely exceeds the generally accepted ~200K number for those with CFS. If they are in fact caused by the same pathology, 'our' numbers have just doubled. At 18 weeks after infection, 12% of the 15+M infected in the UK with...
  3. R

    Physical, cognitive and mental health impacts of COVID-19 following hospitalisation: a multi-centre prospective cohort study, 2021, Evans et al.

    https://www.bmj.com/content/372/bmj.n829/rapid-responses Response to BMJ article. The 5 day old email to the three apparent lead authors has not been answered or acknowledged. At a week in, barring changes to the paper, or an acknowledgement, I'll try a reminder.
  4. R

    BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

    I would argue that employment data and benefits data is a pretty objective measure of actual activity. Of course, even though this was STRONGLY negative, it was only in one table of the 'cost-effectiveness' followup paper, and almost ignored in favour of more carefully cooked measures. (entirely...
  5. R

    Physical, cognitive and mental health impacts of COVID-19 following hospitalisation: a multi-centre prospective cohort study, 2021, Evans et al.

    I've currently been commenting on twitter and in other places, and mailing the involved professors about the severe problems (shared with many CFS papers) in measuring mental health of fatigued patients. Email to the lead investigators. I write with severe concerns on the preprint with the...
  6. R

    The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering PEM: a systematic review (2020) Wormgoor

    I note the very important and highly misleading line ' Currently, there is no scientific evidence when it comes to effective physiotherapy for ME patients. Applying treatment that seems effective for CF or CFS patients may have adverse consequences for ME patients and should be avoided.'. “When...
  7. R

    NICE ME/CFS draft guideline - publication dates and delays 2020

    I am unsure what basis I was referred, but perhaps a decade before that I underwent what on reflection was an CPET and was diagnosed by two specialists following a psych interview and the diagnostic testing with ME in Edinburgh. Thanks for the comments all, I was under the impression there was...
  8. R

    NICE ME/CFS draft guideline - publication dates and delays 2020

    Apologies for the slight off topic. Is there an archive for any guidance prior to the 2007 guidelines? Wondering if there is a timeline of what 'best practice' has done to clinicians according to guidance before then in the NHS.
  9. R

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

    A point I have not seen raised in this thread (or not understood if it has been made). It is important for any mention of CBT in the document to make clear it is not CBT based on the fear avoidance, or 'deny your symptoms' model. CBT for how you feel about the illness might in principle have a...
  10. R

    BPS attempts at psychologizing Long Covid

    Same issue, different disease. Medium-term effects of SARS-CoV-2 infection on multiple vital organs, exercise capacity, cognition, quality of life and mental health, post-hospital discharge To quote my response in https://www.medrxiv.org/content/10.1101/2020.10.15.20205054v1#disqus_thread...
  11. R

    UK - Resources for help getting food during quarantine and other supermarket related problems

    On a technical point, have the carrier bag regulations been waived during this time? Otherwise, the delivery in bags may be costing considerably extra.
  12. R

    Pacing - what do you do/how would you describe it?

    My #1 takeaway is 'fuck normal'. - if something helps you, it doesn't matter. However silly it looks to others, or however much you don't want it to help you, or you should be mentally strong enough to not need it. For example, some building work which I don't really want to happen is going on...
  13. R

    Pacing - what do you do/how would you describe it?

    I am tempted to have two cards for when I go out with A) Brief explanation of CFS, and problems I have. B) Legal threats to the organisation employing the person in question and organisations responsibility under disability law. Just kidding. I don't go out. (but am still wondering about the...
  14. R

    (2009) Cardiovascular Dysfunction with Low Cardiac Output Due to a Small Heart in Patients with Chronic Fatigue Syndrome, Miwa et al

    https://www.jstage.jst.go.jp/article/internalmedicine/48/21/48_21_1849/_article - free PDF at https://www.jstage.jst.go.jp/article/internalmedicine/48/21/48_21_1849/_pdf/-char/en A paper from 2009, made somewhat newly topical by people being worried about covid-19 cardiac symptoms in the...
  15. R

    Evidence for cardiovascular dysfunction

    A note for any of us who notice cardiac symptoms being called out as 'serious' and caused by covid. It may be worth calling attentions to these symptoms being part of CFS too, and are another reason to suspect that the various experiences of the 'long tail' of covid may 'just' be CFS, and...
  16. R

    UK - NHS England online tool and clinics for long Covid.

    I should have perhaps elaborated on the original post. My worries are the entire tone of this piece is 'everyone will get better' - and is considering it entirely as normal exercise physiology, without raising one note of concern.
  17. R

    UK - NHS England online tool and clinics for long Covid.

    Merged thread Extremely dangerous NHS exercise guidelines post covid. https://www.yourcovidrecovery.nhs.uk/your-wellbeing/getting-moving-again/ By being active and starting some exercise you become stronger and fitter. You may notice your tiredness increase and some breathlessness at first...
  18. R

    COVID19 followup studies - cautions to researchers on scale accuracy/...

    I have not seen (through a brief search) any mention of an effort to bring together what we've learned over the decades about how to measure, or mis-measure CFS symptoms, and how this may apply to Covid-19 (or other viral) long term illnesses. Is there such I've missed? For an example of the...
  19. R

    How to explain the 'fatigue' of ME/CFS to non-sufferers - comparisons they could understand

    'I can do anything, as long as it only takes 30 seconds and I've been resting in bed and not thinking too hard the days before'.
  20. R

    Use your Amazon Smile to fundraise while shopping

    Merged thread Amazon Smile is a program to donate a small portion of the price of stuff you buy on Amazon to charity you nominate. This only works if you actually go to smile.amazon.co.uk - or similar. In order to ease remembering this, there are a number of browser addons that will redirect...
Back
Top Bottom