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  1. InitialConditions

    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    As I've said earlier, these are great videos and a great resource for the community. Well executed, good quality, good content. Bravo!
  2. InitialConditions

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

    https://www.theguardian.com/commentisfree/2020/nov/03/long-covid-time-recover This is a great article that focuses on the political dimension of rest and returning to work after long-Covid (or indeed any post-viral illness). The article also mentions ME/CFS and its relation to long-Covid. "In...
  3. InitialConditions

    United Kingdom: News from Forward-ME Group

    This is a bit of a shame because Forward-ME brought together the main/larger charities. It seems there may be some discord between those that run the US and UK camps of ME Action.
  4. InitialConditions

    Amitriptyline Downregulates Chronic Inflammatory Response to Biomaterial in Mice, 2020, Scheuermann et al

    Yes - usually given at low doses (10–25 mg) as oppossed to 50–250 mg for depression. Within the NHS, this is often the first medication given when presenting with ME/CFS or fibromyalgia. As with most of the recommendations, the evidence base is slim to non-existent.
  5. InitialConditions

    Amitriptyline Downregulates Chronic Inflammatory Response to Biomaterial in Mice, 2020, Scheuermann et al

    It's crazy that we are still learning about the other effects of drugs that are really widely prescribed. Apparently fluoxetine (an SSRI) has slight anti-viral properties.
  6. InitialConditions

    Amitriptyline Downregulates Chronic Inflammatory Response to Biomaterial in Mice, 2020, Scheuermann et al

    I just started low dose amitriptyline for nocturnal bruxism which is affecting my jaw and my teeth. It seemed to help the first day or two, but I'm not sure after that. It is helping my IBS though, as it has done in the past, with dialing down any sense of urgency I usually get in the first hour...
  7. InitialConditions

    Research news from Bhupesh Prusty

    Indeed. It's hard for me to take him seriously, which is a shame because I'm sure he means well.
  8. InitialConditions

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Statement from ForwardME re spinal surgery https://www.meresearch.org.uk/forward-me-group-position-statement-re-spinal-surgery/?fbclid=IwAR1adrY5UppVfwslxNXq1QUV-tnzoTlQ727gqfxVLjuLr2Tu1yK_3GUE0b8
  9. InitialConditions

    EUROPEAN ME NETWORK (EUROMENE) Expert Consensus on the Diagnosis, Service Provision and Care of People with ME/CFS in Europe, 2020, Nacul et al.

    'Epidemiological, clinical, and patient-orientated research' would cover a lot of bases for papers that don't fit into the 'Biomedical research' sub-forum.
  10. InitialConditions

    EUROPEAN ME NETWORK (EUROMENE) Expert Consensus on the Diagnosis, Service Provision and Care of People with ME/CFS in Europe, 2020, Nacul et al.

    This reminds me: I think the forum could do with a sub-forum for this sort of general research, to cover clinical research, epidemiological studies, studies pertinent to care, etc.
  11. InitialConditions

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

    * Not due to the persistence of the virus *in the blood*.
  12. InitialConditions

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

    I think this means that there can be a period between the initial infection and a later re-emergence of symptoms where the patient may even feel recovered. I have a friend who felt like she was pretty much recovered only to develope symptoms of POTS months later.
  13. InitialConditions

    Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2020) Stussman, Nath et al.

    I would class the first example as muscle fatigability, something I can relate to without having major issues with OI.
  14. InitialConditions

    Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2020) Stussman, Nath et al.

    Here's how I describe my experience. I have a real-time fatiguability—this is, a small amount of physical or mental activity can make me feel much worse. On top of that, I have a underlying cycle of symptom severity that works on a longer time scale (usually with a period of a week or two). The...
  15. InitialConditions

    Reputable UK lab for blood tests via mail?

    I have no idea about their results, as is the case for any such company. All I can say is my results have been in line with any contemporaneous NHS-ordered test results. But their service is good, it's a slick operation, and they seem to be a reputable company.
  16. InitialConditions

    [UK] Pain medication from GP

    What would be other alternatives, aside from higher doses of ibuprofen?
  17. InitialConditions

    [UK] Pain medication from GP

    I think at the dose and frequency I was using there is minimal risk. I had a pack last 7 months. But yes, I know there are risks.
  18. InitialConditions

    Reputable UK lab for blood tests via mail?

    Thriva are decent, although they only do the main 'popular' tests, and they are often grouped into packages that might not suit everyone's needs.
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