I’m really not sure how this post is going to be received. This is a massive topic, and it’s linked to many other factors, but I’ve tried to keep it on this one issue.
Almost 30,000 people have placed orders for Acu Seeds with the individual who was on Dragon’s Den recently. Why are even people with M.E. missing the point that M.E. cannot be cured by anything yet, let alone ear seeds?
On a very personal level, I’m offended. Offended that in their desperation they imply that there are ways out of the suffering that M.E. brings, and that those of us who aren’t buying in to such “cures” could be doing more to bring ourselves relief.
There is no cure or proven treatment for M.E. None. The only universal thing that makes any difference to patients is radical rest. For some, certain medications may alleviate certain symptoms (I take sleeping pills to help the symptom Insomnia, for example). Others taking the same medication for the same symptom may see no change, or even an exacerbation of the symptom along with other side affects. So rest is the only thing that can help every single M.E. patient. Nothing else.
Why then, is it okay for services and individuals to make profit from selling fixes and cures; making claims that have no scientific backing? More so, why do people with M.E. fall into the trap of assuming they will be the one exception who is indeed helped by forking out money to placing tiny acupressure devices on your ears? (I did not enjoy having to research this post!)
Desperation of course.
But with an ongoing BBC saga, I’m seeing division within a community that cannot afford to be divided on this topic. People with M.E. deciding to remain impartial, make purchases from this particular individual, and see how they get on.
I tend to think “each to their own”. Let each individual follow the path that works best for them; trying everything and anything. But when it’s made national news? I don’t think we have the option to not renounce things of such…nonsense.
We have to break the cycle of buying into unfounded solutions.
Our illness remains disgustingly stigmatised and grossly misunderstood. We are not in a position to let these things slide. There is still too much misunderstanding for us to be a part of continuing the rhetoric that we could all get better thanks to the numerous, unfounded ‘treatments’ that people have sold us for years.
We need science. We’re not yet in a place where we have the luxury to be even pretending that we don’t.
There are some things that I don’t think we can be impartial about, and this is one of them. We can’t just let it be, because the masses still believe gross and wild inaccuracies about M.E. and in doing anything other than calling this particular out as outrageous blurs the already blurry view of our particular illness.
“What harm does it do to allow someone to give the ear seeds a go?” It does a lot of harm!
We can’t afford to keep allowing this idea that there are cures for this health condition, because there aren’t. The longer we don’t call that out, the longer our whole sorry story goes on. To have people with M.E. going along with claims allows the narrative that we could all improve our suffering by trying X Y and Z to continue. They’re perpetuating the idea that it’s okay for an individual to stand on national television and declare to have a “cure” for the incurable.
We just keep shooting ourselves in the foot by pandering to these people selling us a lie. I do get it; we’ve all been there and we’re all desperate. But in this particular instance, where so many of us and our families have had to complain to the BBC, people actually supporting this individual and their claims surely makes Outsiders wonder what on earth we’re complaining about, when others with M.E. are being Good Poorly People and remaining ‘open minded’.
'M.E. myself and I' by Anna Redshaw 