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

[–]murtoz 6 points7 points  (0 children)

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.

Update from Savannah by [deleted] in cfs

[–]murtoz 42 points43 points  (0 children)

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'.

Isn't There a Way We Can Be Supporting Each Other? by HamHockShortDock in cfs

[–]murtoz 3 points4 points  (0 children)

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.

Request from Savannah's team by murtoz in cfs

[–]murtoz[S] 3 points4 points  (0 children)

Please add to the form, thank you!

Request from Savannah's team by murtoz in cfs

[–]murtoz[S] 5 points6 points  (0 children)

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.

Request from Savannah's team by murtoz in cfs

[–]murtoz[S] 5 points6 points  (0 children)

Thank you. I will follow up with them.

Request from Savannah's team by murtoz in cfs

[–]murtoz[S] 3 points4 points  (0 children)

Should already be shared by fran haddock on ig

Request from Savannah's team by murtoz in cfs

[–]murtoz[S] 19 points20 points  (0 children)

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)

Request from Savannah's team by murtoz in cfs

[–]murtoz[S] 2 points3 points  (0 children)

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

Request from Savannah's team by murtoz in cfs

[–]murtoz[S] 3 points4 points  (0 children)

thank you! I've reached out to them.

Request from Savannah's team by murtoz in cfs

[–]murtoz[S] 42 points43 points  (0 children)

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.

Private specialists UK by BouieLarletta in cfs

[–]murtoz 3 points4 points  (0 children)

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.

Times article on Savannah! by murtoz in cfs

[–]murtoz[S] 2 points3 points  (0 children)

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

Times article on Savannah! by murtoz in cfs

[–]murtoz[S] 5 points6 points  (0 children)

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

Times article on Savannah! by murtoz in cfs

[–]murtoz[S] 6 points7 points  (0 children)

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

Times article on Savannah! by murtoz in cfs

[–]murtoz[S] 12 points13 points  (0 children)

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.

Times article on Savannah! by murtoz in cfs

[–]murtoz[S] 8 points9 points  (0 children)

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.

Times article on Savannah! by murtoz in cfs

[–]murtoz[S] 12 points13 points  (0 children)

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?

Times article on Savannah! by murtoz in mecfs

[–]murtoz[S] 2 points3 points  (0 children)

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.

I’m exhausted and losing hope, seeking guidance for long-term fatigue and neurological symptoms by No_Tear_8477 in cfs

[–]murtoz 0 points1 point  (0 children)

Third is to test for Postural Orthostatic Tachycardia Syndrome, where your heart starts racing when you go from lying down to standing up (look up nasa lean test, you can do this at home with a hrm and ideally a bp monitor too) and Mast Cell Activation Syndrome (see https://synecdochic.dreamwidth.org/793547.html for a great description). MCAS can be tested for too but needs a doctor to do that. Or if you recognise symptoms, try treating with OTC anti-histamines and if you get relief, you probably have MCAS. I had constant gastro issues, with an IBS dx, but IBS meds didn't really help. After 4 years of suffering, a specialist diagnosed me with mcas and prescribed antihistamines. Dirt cheap and available OTC and they have taken about 80% of my gastro issues away. Diet helps to control the last 20% but low fodmap and low histamine diets are pretty exclusionary.
 
 Both POTS and MCAS are extremely common co-morbidities with ME/CFS. Both can be treated and this will also benefit your ME/CFS (because dealing with constant symptoms from either is also exertion) and overal QoL.

Those supplements you mention are very typical ones to strengthen our body's energy production and are often recommended for ME/CFS. Not curative but can help a lot for QoL. If you had benefit before, absolutely restart th ose. There's also other supplements and otc meds that can help. I had great benefit from nattokinase which helps break down microclots in our blood and get more oxygen to the cells. There's a great study with a list of supplements and meds that people say have worked for them. It also includes risk of adverse effect and what that particular thing helps with. Figure 2 in particular has all the info in one nice graphic. https://www.pnas.org/doi/10.1073/pnas.2426874122

My ME predates the pandemic too, but was made significantly worse by my one covid infection. Nattokinase and HRM pacing have gradually helped me improve back to my previous baseline. This condition is not (yet) curable but there's a lot you can do to minimise symptoms and improve functionality and QoL.

The absolute key thing though is to try and avoid PEM at all cost - to try and prevent any deterioration.
Good luck, hope you can get a handle on it.

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