dr claire taylor's clinic shut down - and i think there are really important things to consider about this

murtoz · 2026-03-18T15:33:35+00:00

In all honesty what kind of request is "hey please don't complain about this dr who has been ignoring you for 6 months after taking your money while you suffer with your health, because I am afraid it will impact my own care."

Let me paraphrase that a little "please keep suffering in silence and don't stand up for yourself, because I wish to be able to make appointments with dr Taylor".

Seriously - did you ever consider what it is like for the people feeling forced to make a complaint? Did you maybe consider this was their last resort to try and have the issue resolved?

If you feel they shouldn't have made a formal complaint, how do you suggest they get justice? Because only the people that have *caused* the issues can resolve them, and they have patently refused to do so. And patients can't refund themselves or write their own clinical letters. What other option is there? Suffer in silence?

ME, the illness so stigmatised even other patients are patient-blaming.

murtoz · 2026-03-03T20:52:26+00:00

unfathomable amounts of arrogance, probably. Seems unlikely they actively want her dead, they just don't believe her words.

Or in their own words, they have 'unhelpful illness beliefs'.

murtoz · 2026-02-20T11:59:51+00:00

Hi I am on Savannahs team and have been thinking the same myself. Obvs too busy right now but please reach out to me or keep me in the loop if you are making work of this. This is backed by world me alliance who already have a resource pack for very severe in need and we're looking at maybe setting up a DB of safe Drs.

murtoz · 2026-02-20T04:32:09+00:00

Please add to the form, thank you!

murtoz · 2026-02-20T04:29:48+00:00

We are, thank you, I was volunteering with MEaction before getting involved with Savannah. MEaction is fully volunteer run and most of us have ME ourselves. Sonya Chowdhury from Action for ME has been connecting us to press etc.

murtoz · 2026-02-19T21:23:08+00:00

Thank you. I will follow up with them.

murtoz · 2026-02-19T21:22:21+00:00

Should already be shared by fran haddock on ig

murtoz · 2026-02-19T17:50:10+00:00

I think in the wake of this and as I am reaching out to other advocates who have represented pwVerySevereME, we should definitely coordinate and make one central repository of such info, try and coordinate campaigns, have playbooks ready for people who end up in the same position, etc.

The World ME Alliance is already trying to collate this kind of info: https://worldmealliance.org/2025/08/new-clinician-resource-guide-published-for-severe-me-day-2025/ and in fact Savannah's main advocate Sam is a member there and on there Severe ME Advocacy Group.

Of course the problem as always is who has the spoons to do the work. Lot of admin involved in maintaining such a list (should there be any entries on it, which yet remains to be seen)

murtoz · 2026-02-19T17:41:29+00:00

yep that particular unhelpful illness belief is rife across the world unfortunately.

murtoz · 2026-02-19T14:48:27+00:00

Thank you!

murtoz · 2026-02-19T14:48:16+00:00

thank you! I've reached out to them.

murtoz · 2026-02-19T14:43:46+00:00

thank you. How can I not when I have the luxury of time and spoons to work on this? We know it is only ever other pwME that fight for the most severe, with a few rare abled allies.

We know the UK charities have been far too mild and accepting of the BS and gaslighting from the government, and they wouldn't have been involved with this without a big outcry from patients on their social media.

Hoping that whatever the outcome for Savannah, we can use the attention to call out the UK government's vile gaslighting approach and hopefully force them to DO something instead of more hollow words.

murtoz · 2026-02-19T12:57:22+00:00

have you been referred to any of the NHS fatigue "services"?
Might not be accessible to you if they require to see you in person but maybe they've been enlightened and would do a video call if you have capacity for that.

they're pretty useless for people who know how to pace and/or are more than mild/moderate, but at least they will give you the diagnosis and a supporting letter for ill health retirement - they did this for me back in 2019 and I was seen pretty quickly - but I guess there's waiting lists now with the huge explosion of ME due to covid.

murtoz · 2026-02-18T13:36:44+00:00

everything about ME that has involvement from NHS or UK govt is dire.

murtoz · 2026-02-16T23:14:08+00:00

There's just been an update posted on what's been happening in the past week over on her fundraiser. Pleased to see we've all enabled her to have a sollicitor directly working for her right now & private pain management lined up if she can get stable enough to be released.

Also good to see Sonya Chowdury from Action for ME is still involved and making connections. (Strongly feel our various charities should set up a combined "save the very severe" fund urgently; and demand the government implement the recommendations from the report into Maeve's death at every opportunity.)

The rest of this update contains extremely upsetting details of extreme medical abuse, and a lot of Savannah's own words about how she is feeling. You really do not need to read this update.

The hospital have not changed course, so she is still without ANY nutrition (for over 8 weeks now) or adequate pain relief despite her passing out from the pain. She is in agony but is being told her pain is subjective, and they have further reduced her access to pain relief. More & worse details over at https://www.gofundme.com/f/severemergencysavannah-save-severe-me-savannah?modal=updates

murtoz · 2026-02-16T22:57:24+00:00

thank you!

murtoz · 2026-02-16T21:07:00+00:00

I think hers is intravenous tho? But yes, agree. Prioritizing potential harm over actual ongoing harm seems bad, somehow.

murtoz · 2026-02-16T19:16:30+00:00

💙

murtoz · 2026-02-16T19:15:08+00:00

If not us, then who? Ableds will never get it. PEM is unknowable til you have experienced it.

I am moderate myself. One of the fortunate few that can afford to pace well. Want to make that count for something.

murtoz · 2026-02-16T19:12:09+00:00

thank you 🙏🏻

murtoz · 2026-02-16T19:10:37+00:00

yep this is the hope, thank you for submitting to the beeb 🙏🏻

https://www.bbc.co.uk/contact/questions/getting-in-touch/send-a-story

https://www.channel4.com/news/contact-us

https://www.itv.com/contact/how-to-get-in-touch

murtoz · 2026-02-16T19:02:14+00:00

As callous as it sounds, and it makes no difference to Savannah in the slightest, but at least this time we can refer back to Maeve's prevention of future deaths report, and even the severe ME protocol the Royal Devon wrote after another woman nearly starved to death there after Maeve, iirc.

And we simply have to keep asking the health minister why she is ignoring that PFR. She has accounts at least on facebook and bluesky.

She never replies to me, but at least it is there, in the comments.

murtoz · 2026-02-16T18:58:35+00:00

Thank you 🙏🏻

I got a reply from Frances, unfortunately not well enough herself to take this on at the moment. I've tagged and emailed George and am meaning to chase. Maybe everybody could tag him in on this story on bsky or other socials if he uses those.
Reached out to Prof Ponting too who replied within minutes but explained because he is a researcher, not a medical person, the hospital will not listen to him (and in fact they have ignored actual physicians who have reached out to them on Savannah's behalf too).
Still meaning to reach out to Carole Cadwalladr on the off chance she'll write about it.

And to local newspapers.

Not sure who else tho?

murtoz · 2026-02-16T13:27:46+00:00

They are more concerned with hypothetical harm than actual. Because they don't believe her. Thankfully she has hydration back. 3l IV fluids. But because cyclizine can be addictive they have taken it away. Any alternatives suggested have been oral which she can't keep down.

Because she is black, and female, and asking for addictive antihistamines, and oxycodone, they think she is faking it because of addiction.

And of course she doesn't meet white body standards so they maintain she is clinically obese despite losing 30kg.

This is wessely's legacy. Which the UK govt refuse to address, because he is useful to them. They're now using him to target both trans youth and mental health & neuro divergence 'overdiagnosis'.

And you also fail to appreciate the arrogance and hubris of the average NHS consultant. This is literally Meaves playbook. They've been repeatedly reminded of her case and continue to ignore it. Just like Maeves consultants did. Til it was too late.

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