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  1. Fainbrog

    UK doctors knowledgeable in ME/CFS?

    I've recently seen Dr. Claire Taylor on a virtual appointment. Having seen her about 3 years ago whilst she was working with The ME Trust, I had a reasonable expectation of what she would be like and I cannot recommend her highly enough, based on my experience. We had about an hour for the...
  2. Fainbrog

    Earseeds, Acuseeds

    Interesting article in DM that Dragon's Den this week has been edited to remove some other health fad pitch, involving mouth tape(!) https://www.dailymail.co.uk/news/article-13037311/dragons-den-mouth-taping-bbc-backlash-ear-seeds.html So, whilst they may not have removed Giselle (yet), they...
  3. Fainbrog

    Earseeds, Acuseeds

    Curious (and sorry if someone else has asked/commented, too many posts to read through from today), I wonder if 'compliance' will mean they have to contact all those with outstanding orders/recent purchases, to advise that they were falsely advertised and give the option to not proceed with the...
  4. Fainbrog

    Earseeds, Acuseeds

    According to The Mirror, the ASA has gone pretty much straight to enforcement on Acu Seeds.. https://www.mirror.co.uk/tv/tv-news/dragons-den-ear-seeds-scandal-32015953
  5. Fainbrog

    Earseeds, Acuseeds

    As this new article on MSN suggests toward the end, if nothing else, Dragon’s Den has driven awareness of ME, and, prompted articles such as this - which, I hail as the best article I’ve ever read regarding ME (surpassing the Mirror piece last week) in my relatively short time with this blasted...
  6. Fainbrog

    Preprint Repeated Hand Grip Strength is an Objective Marker for Disability and Severity of Key Symptoms in Post-COVID ME/CFS, 2024, Paffrath et al.

    I had repeated HGS testing done as part of my income protection claim assessment. It was to me a pretty effective way of showing how broken my body was, I couldn’t even complete the small number of grips that they wanted on day one and couldn’t do any on day two - suggestive of PEM (but the...
  7. Fainbrog

    Earseeds, Acuseeds

  8. Fainbrog

    Earseeds, Acuseeds

    Not the first time he’s said stuff that doesn’t stack up. I’d hazard a guess he’s not been misquoted, sadly..
  9. Fainbrog

    Earseeds, Acuseeds

    The plot thickens.. https://www.dailymail.co.uk/femail/article-13000157/dragons-den-snake-oil-salesman-rival-litigation-battle-ear-seeds.html?fbclid=IwAR1RYa_gHIydBau-1-c03n16wZbR2A0jL4KBt1MuTYaWNwNkvcMNmnmVs2Q
  10. Fainbrog

    Earseeds, Acuseeds

    I see the company director thing and name change as non-issues, he can’t be that involved in all his businesses and will have a trusted person added to those that he invests in. And the name change could well be from due diligence of similarly named companies elsewhere- like the one in the US...
  11. Fainbrog

    Earseeds, Acuseeds

    Also The Times and Metro getting in on it. Feels like something of a seminal moment in coverage of ME (in my relatively short time as a pwME at least) where those who have our backs have control of the narrative for once.
  12. Fainbrog

    Earseeds, Acuseeds

    I felt dirty visiting the DM website, but it feels worth it given how reasonable the piece was. Now off to clear my browser history..
  13. Fainbrog

    Earseeds, Acuseeds

    Now articles in the Daily Mail and Sun about this. Not sure who's driving the media coverage on this but seems to have been a pretty darned effective media strategy and all groups seem to be working together. More of this please.
  14. Fainbrog

    What can we learn from the Post Office scandal publicity (including TV)?

    100% this. I think short term, the narrative needs to be controlled documentary/podcast-style (by an ME friendly), not dramatised - that can come later. Present the desired narrative, use real pwME harmed by GET, present the day-to-day hideousness of this illness, the horror stories many of us...
  15. Fainbrog

    UK doctors knowledgeable in ME/CFS?

    I saw Dr. Anna Barham through AfME and would rate her based on my experience. But, sounds like she was moving on based on my last comms with the medical team at AfME (and I've not explored too much if she has a private practice). So, am seeing Dr. Claire Taylor in Feb. If helpful, the other ME...
  16. Fainbrog

    UK doctors knowledgeable in ME/CFS?

    I too saw her in the MET days, was excellent (as was the letter - and to be fair, so to have the AfME letters I have had subsequently), made some really practical suggestions and referral suggestions which have been useful (but obviously not curative!). I'm seeing her again in a couple of weeks...
  17. Fainbrog

    Action For ME Healthcare Services

    Annoyingly, I've just heard from AfME that Dr. Barham is 'taking a break' in the new year. Trying to find out what that means in reality. Am gutted, having had two really good appointments with her, I'll likely be back to square one with a new doctor.
  18. Fainbrog

    (UK) Living with M.E. A Photographic Study by Jeremy Jeffs

    I met Jeremy at our local ME Group at the start of the year and have been trying to schedule a time for him to come and take some pics of me. Circumstances have interfered with our success on that front..but am hopeful we will get there eventually. I saw some of his pics and they were thoughtful...
  19. Fainbrog

    United Kingdom: Action for ME (AfME) news

    If these new Drs are in the same mould as Dr Barham their current only Dr, this is defo a good move. From their AGM, iirc, they saw c.75 patients last year (which made me feel rather blessed that I was one of them given that number - tbh, I hadn't considered how many, but I'd assumed probably...
  20. Fainbrog

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Having used both Visible basic since Feb/Mar this year (I think) and then a couple of months of Premium over the summer, I've binned the whole thing as I didn't see any discernible benefit (for me). Primarily, when I reflected on my use over a reasonable period, I concluded that I was rarely...
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