As my daughter died of ME, the state met in secret to blame me
https://www.thetimes.com/article/c5de6bf4-752c-4ab9-9916-721f624314b9?shareToken=cd18a7eb7497ec8f7301a1931f794ac7
Posted by cuzbrushtruewood
As my daughter died of ME, the state met in secret to blame me
https://www.thetimes.com/article/c5de6bf4-752c-4ab9-9916-721f624314b9?shareToken=cd18a7eb7497ec8f7301a1931f794ac7
Posted by cuzbrushtruewood
11 Comments
My daughter has severe ME. In about 2018 we went to an NHS ME clinic for ‘treatment’. It was run by a psychologist with no nursing background who forced my daughter to do graded exercise therapy and shamed her for ‘not wanting to get better’ when she failed to complete the exercises because she literally collapsed.
When I went to her next appointment we were separated, and the therapist suggested that I was making the ME worse by being overprotective, and my daughter probably had trauma she was using the ME to cover up for (suggested sexual abuse).
The NHS is awful for ME patients. We now just manage her symptoms at home but I dread if she escalates because no one is trained in it. The best care we’ve had has been through the GP who knows her personally.
The ME rabbit hole is astonishingly deep and very frightening. There is very clearly something not right with the official response to it at pretty much every level, which becomes apparent the more you look into it.
I narrowly avoided a diagnosis of this because they found a genetic disorder that explains the symptoms instead, and my treatment by medical professionals changed overnight. I obviously didn’t have ME or anything adjacent, so I wouldn’t have ended up like this.
But it is chilling to have experienced such a radical change in attitude from medical professionals based purely on my diagnosis rather than my presentation. Things I had already told them I couldn’t do but which they insisted I could and should do suddenly became things I should only do under supervision; concerns that were readily dismissed suddenly became valid.
No one wants to be ill, but I’m extremely glad that I wasn’t ill with ME. The official response to it is just too bizarre.
NHS staff *desperately* need MECFS specific training. I worked in NHS mental health before I developed long covid and MECFS, and MECFS was never mentioned in the three years of training I did before qualifying, or in trust specific training once practicing, and the general attitude among my colleagues was a vague assumption that it’s probably not a ‘real’ condition and that it’s impacts are largely psychological. An HCA I worked with when I was newly qualified actually developed MECFS during my first year of practice and was ultimately let go because they could no longer manage the night shifts their contract demanded and the implicit view of management was very much that he wasn’t ‘really’ ill, which meant they were reluctant to make the usual accommodations and adjustments that they would for a newly developed health condition.
NHS staff desperately need MECFS specific training to make them aware of the huge advances in knowledge base that have occured since the 90s and 00s when the consensus was that it’s a primarily psychological condition. The current research shows pretty unequivocally that this is a physiological condition and that patients or staff who require illness specific accomodations in their care or employment are not being ‘difficult’ for the sake of it, and that making these accomodations is not ‘colluding’ with or reinforcing some sort of delusional health belief.
There has been some welcome news recently, though, with the government announcing a raft of changes aimed at improving ME care in the UK, one of which is to: *introduce new training for NHS healthcare professionals, featuring up-to-date learning resources to increase understand and ensure signs aren’t missed. This will help combat the stigma faced by people living with ME/CFS, which stems from a lack of awareness about the condition*
https://www.gov.uk/government/news/boost-in-support-for-patients-with-chronic-fatigue-syndrome-or-me
The minute you challenge ignorant and mostly incompetent social workers, they start viewing you as the source of the problem. I learned this when I forced the LA to bring in an independent social worker to review their behaviour with my family.
In the report, it stated that social services found me combative. At that time, I was challenging them for not following process and the law in relation to my children. They don’t like people who educate themselves.
The only apology I ever received from the LA was for the very issues I was supposedly being combative about where they admitted they had failed.
The UK is an absolute joke when it comes to chronic illnesses like this – often you’re offered minimal to no treatment but BS ‘courses’ to ‘think the pain away’.
Thankfully there has been recent research which was able to find several genetic differences in someone with ME in comparison to those who don’t – hopefully this means there will be some sort of real treatment available in the near future.
I’ve been on the ME referral list for treatment for 5 nearly 6 years it’s a bloody joke. Some days I can barely move and the gp is fed up of other chronic health issues developing in the mean time like PoTs. It’s a nightmare
The NHS has several institutional problems, but because of the capture it has on the nation’s psyche, it is not easy to criticise or point out these problems.
The whole health system is stuck in the 1970s all across the world with chronic health problems.
even the doctors dont really properly understand them.
the problem is their is no way to get the latest science in to the mainstream health system.
i have a similar experience to the lady in the article.
its really dystopian.
Not going to comment on the NHS or the daughter specifically but there are strong emerging links between these types of conditions and chronic exposure to mold whilst growing up which leaves a possibility open for treatment (mold avoidance, anti fungals etc).
There is a wealth of information on YouTube about mold toxicity and conditions like ME/MS come up very frequently.
It’s a similar story in most other countries as well. ME is not taken seriously as an illness.
If your daughter died of ME and the state then blamed “me” for killing your daughter, they are not wrong. I’m very sorry for your loss.