Good article. Recovery stories are a common comorbidity of any intractable illness. Good line. ME/cfs and Long Covid are similar enough in their aetiology that, recently, research has actually accelerated. More has happened in the last two years that I have been sick than in the six that proceeded them. And the near half century before that.
New banner on the #AcuSeeds website, "This product is not used to diagnose, treat, cure, or prevent any disease." https://twitter.com/user/status/1756268187505541572
oh and the following "Very few of the people recommending some foul tea actually care if you get better or not, they just find being faced with the reality of mortality and suffering uncomfortable, and want to regain a sense of control by imagining that the sufferer is a wet-eyed naif, incapable, unwilling or unable to take control of their situation or to explore all available options." needs to be emphasised to a lot of people who do this, ie what are you actually saying that there is a bigotry under there for many, and that picking that up isn't 'being read into' if someone persists because that is their consistent message they are actually saying and choosing not to learn to update. But... I think some fall into the trap (sadly society has fallen apart in general with etiquette being royally turned on its head in certain demographics in recent years to 'nice' being the opposite of the real meaning of that) of thinking as long as the link/mention/whatever states the illness name in it then it 'shows you are interested/thinking of someone', probably because they use the same principle of it deserving a gold star that they remembered their friend was a teacher and it showed they weren't ignoring them the whole time they talked etc. Warning next bit is a bit of a side-note Sadly I link much of this to the bum steer on mental health (including most of the official stuff from places we might be familiar with). where instead of (the proper research when psychology as a science was doing things more properly, where it was known that strength of support network was a big factor) focusing on the real stuff that makes people genuinely happier like developing real connections, meaningful stuff (so it might be 'helping to receive'), and providing functional support to get rid of problems eminently solveable by support but impossible when lumped onto the person, they think suggesting short-term hedonism 'boosts' (and telling people what they want to hear) to get a short-term, carefully-timed response on a questionnaire suggestions is anything other than short-term distraction. It is stressing yourself trying to race to a crap pilates/mindfulness class in the rush hour after work before nursery pick-up, when the timeframe never fit anyway, 'for the sake of balance' or because work said you needed it instead of tackling workload or being given space to not rush etc., and telling yourself you've improved your concentration or something by it And parents paranoid that their halloween party looks like they care to the system and neighbours etc because they are genuinely now judged on stuff like that rather than whether they can concentrate at reading time before bed and teaching them to be properly kind and not to bully etc. That was always known as toxic nonsense. And I remember the classic people feeling lonely in a room full of other people stuff (certainly if they are being ignored and disregarded). And knowing that whilst certain people/types 'only bond over activities' (if they do at all) most used to have relationships/connections that were based on genuine communication (and that being important), before the days they believed they should encourage serious stuff like that should be discouraged unless 'being paid for'. But I think a lot of those in charge have focused on the idea that empathy to the point of basic manners/ability to do job as intended is some sort of flaw rather than those who can't do it needing the focus/being the worry. And that being real is 'dirty washing in public' (back to the old days). Stuff's gone generally off the rails I think. And I think it originates from/coincides with mixing up using the term 'mental health' for being a well person who wants to make sure they get in their coffees and hobbies wanting to have a term making that important (which it might be somewhat if in the case of someone ending up with 4 jobs and no money eventually breaking because life is a misery with nothing good for too long, but isn't normally the individuals citing it) with the more serious situations. 'apparently to stop the stigma' but as per it leads to lumping and dumping so you have lowest common denominator half-arsed advice based on what the more well either prefer or will give a few marks for. Noone actually knows what is being meant by the term so there is no accountability when someone cites it. And eventually they begin to measure that 'wellness' itself based on whether someone conspicuously consumes/performs x amount of these activities they deem are in 'the right way' - rather than whether they've found things that are fulfilling and can engage - hence the cart before the horse with the whole physical health thing. SO it has now become obscure where those deemed 'most mentally well' by such measures on paper wouldn't seem to be what we would have recognised as that before recent times. And when it becomes 'the entire suggested way of life' leads to bunches of people 'booking in coffees and trips' 'because my mental health' where they hang around with others all ignoring each other as they talk. Or doing mere small-talk. Or missing enjoying the trip itself because they spend the whole time diarising the next event. At the same time getting less and less able to concentrate on anything, particularly when its not something they personally organised or chose. One could say it is almost another sort of consumerism being sold to replace what it purports to 'fix'. Ergo you get people who 'don't/won't see' sending a link like that different to their sending a link to a suggested trip or 'product you'd like' as any different, because they don't see how much of it is empty (or that empty is what they are feeling under all that distraction). SO they think they are saying they wish you happiness, because they've been conned down that red herring of a rabbit hole themselves.
'This product is not used to diagnose, treat, cure, or prevent any disease.' This statement is in small print at the top of the pages and is very easy to miss. She is still using 'Recovery from Chronic Fatigue Syndrome' as a selling tactic. 'giselle's recovery from chronic fatigue syndrome' '... in January 2019 I was finally diagnosed with "moderate" Chronic Fatigue Syndrome/M.E. I was told by Western doctors that I would never recover, never work again or have children.' '..... It wasn't until I found a Traditional Chinese Medicine doctor in Sheffield that I was able to get my life back. The Chinese doctor did acupuncture on me, as well as using ear seeds and also gave me Chinese herbal remedies. I saw her every week to begin with, and then it reduced down to once a month. By Jan 2020, all of my symptoms had gone. And by March 2020, I began to run again and considered myself fully recovered from CFS. In April 2020, I fell pregnant. Traditional Chinese Medicine is what I believe skyrocketed my recovery and inspired me to start Acu Seeds, sharing the benefits of ear seeds with the world.' https://acuseeds.co.uk/blogs/articles/giselles-recovery-from-chronic-fatigue-syndrome Still advertising courses to become a 'acu seeds practitioner' for £599 https://acuseeds.co.uk/pages/learn-1 .
Now it's multiple 'Western doctors' who are supposed to have told Giselle she would never recover, never work again, never have children.
If only 'Western doctors' were so in touch with, and willing to state, reality. (about recovery/work not children - i honestly dont believe any dr ever told her she'd never have children - ME has nothing to do with fertility). If you went to any ME/CFS clinic in the UK i'd be astonished to discover any of them said anything other than 'most people recover over time with the right treatment' - telling people they wont recover or work again would go entirely against their ethos.
I have seen over fifteen doctors in the 30 year course of my ME and only one admitted I was unlikely to recover or be able to work again, a neurologist with a declared special interest in ME I saw privately when in pursuit of ill health retirement. Most UK doctors I have seen presented unrealistic optimism and certainly in the first years of my condition all claimed time, healthy living and positivity would result in recovery. ( I have also heard anecdotes of doctors telling female patients they know of people with ME who recovered when pregnant.)
Giselle Boxer, despite asserting she was so ill she could barely walk for more than five minutes without having to get back into bed, is also on record stating she had a total of 4 weeks off work, then a phased return to work. "In 2015, I contracted a virus which I believe was glandular fever. Fast forward three years and I started to develop flu like symptoms, debilitating fatigue, muscle ache, joint pain, weakness, heart palpitations, digestive symptoms, headaches, brain fog and noise sensitivities. I could barely walk for more than five minutes without having to get back into bed...." https://acuseeds.co.uk/blogs/articles/giselles-recovery-from-chronic-fatigue-syndrome https://twitter.com/user/status/1749823530621956199 Giselle Boxer: "I had 4 weeks off work then a phased return. I work from home 1 day a week to help with stress levels and avoid the commute" "I was bedbound/housebound for about 4 weeks and gradually built myself up" .
@Lou B Lou thank you for finding this. However I think you have a typo in this quote which should read ‘I work from home 1 day a week to help with stress levels … ‘. Which presumably means she works five days a week, four of those days in the ‘office’.
https://twitter.com/user/status/1756705067820880329 markmooch @MarkMooch Acuseeds have a 2 star rating on trustpilot from 39 reviews. Seems a lot of people aren't happy with the product or service with the inability to cancel an order, only getting part of it or seeds falling off and into the ear canal, aside from not working. https://uk.trustpilot.com/review/acuseeds.co.uk It's worth skimming the Trustpilot reviews.
A video I watched where she states that she travelled to Australia for blood work but they found nothing. On the same video she states that she hated her former career.
Yikes. The number of customers who said the seeds have fallen off and ended up in their ear canals is very worrying. It's bad enough that they're useless rubbish, without the added issue of their being potentially dangerous to the inner ear.
yikes! It should be noted that the action case regarding 3M ear plugs is regarding the fact that they were issued by the military to protect soldiers' hearing - and its alleged that they didnt work - its not about injury caused by the ear plugs themselves being in the ear - ie its not an injury caused by having ear plugs in, but rather by the noise they were supposed to be protecting from. Just wanted to highlight that in the context of the conversation being about the seeds falling into the ear canal and causing harm..... knowing many of us use plugs
https://twitter.com/user/status/1756705067820880329 Acuseeds have a 2 star rating on trustpilot from 39 reviews. Seems a lot of people aren't happy with the product or service with the inability to cancel an order, only getting part of it or seeds falling off and into the ear canal, aside from not working. uk.trustpilot.com/review/acuseed…
Another article on The Skeptic this time by Michael Marshall on developments following the ear seeds promotion, the failure of the BBC to act responsibly and Dragons' Den promotion of other products claiming to enhance health. https://www.skeptic.org.uk/2024/02/...ckery-problem-that-goes-far-beyond-ear-seeds/ It is particularly concerned with the role of the BBC to whom Michael Marshall has written an open letter concerning other inaccurate claims about alternative health products in Dragons' Den.
