Address Non Existent ME Care NHS Told.

[Sparklingsunshine]

This is the follow up to my post a couple of months ago about the tragic case of Maeve Boothby O'Neil. Who died from severe ME complications aged just 27. These are the findings and issues/ concerns raised by the Devon coroner Deborah Archer following her inquest into Maeve's death and are addressed to the Health Secretary Wes Streeting.

theguardian.com/society/202...

[humanbean]

I was shocked that despite all the palaver of the inquest, doctors involved in "treating " people with ME have ended up in a situation where they will give "treatment as usual" and they won't stop people dying of starvation because they seem to have come up with the idea that death is inevitable so why bother treating?

Or at least that is my understanding of some of the articles I've read since the inquest ended, and I could easily have got the wrong end of the stick.

[DippyDame]

The NHS on their website state..

Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition that can affect different parts of the body. The most common symptom is extreme tiredness. The cause of ME/CFS is unknown.

nhs.uk/conditions/chronic-f...

Yet, the following study offers another explanation...

frontiersin.org/journals/en...

Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study

Was this possibility ever considered?

As someone diagnosed many years ago as having CFS, FM and other syndromes I refuse to accept that, "The cause of ME/CFS is unknown".

I'm convinced T3 has a huge involvement in ME/CFS. Why!

A number of years ago I became very ill, barely able to function. I didn't know it then but on reflection I'm convinced my body was beginning to shut down

Medics had nothing to offer but....

already diagnosed as hypo in 2000, I had started to investigate possible reasons for my declining health and was starting to learn about and introduce T3.

What happened is related in my bio.

Had I not started to understand T3 and how I needed to use it i'm convinced my body would have continued to shut down... until I died!

Had that happened my Death Certificate would have recorded Myalgic Encephalomyelitis....not a reference to lack of T3!

I wonder how many poor souls have suffered and died behind closed doors because low cellular T3 was never suspected or investigated....correct treatment may very well have saved them. It is horrendous!

In sheer frustration I once told a GP that if she had no idea what was wrong with me, or how to treat me, then I would go and find the answer myself She was taken aback and told me not to upset myself and instead do what I was being told to do.

Thankfully I ignored her, because I don't think I'd be alive today if I hadn't gone off piste and found the cause of my declining health...and how to treat it.

So why was Maeve Boothby O'Neil not treated with at least a trial of (a supraphysiological dose of) T3....

I suggest one word, 'ignorance'.

It may not have been the answer ....but it could very possibly have been.

Maeve Boothby O’Neill, 27, died in October 2021 at her home in Exeter after living with ME, also known as chronic fatigue syndrome (CFS), for more than a decade. The coroner heard there was not a single NHS or private bed in England set aside specifically for the treatment of a patient with severe ME.

The coroner wrote: “The evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths could occur unless action is taken.”

Never a truer word spoken....but who is prepared to take that action. Petitions to both Westminster and Holyrood fell flat...T3 was once again sidelined

I'm a bit of a T3 geek and make no apologies for my views....and would wonder if instead of dying from severe ME complications, Maeve died from severe cellular deficiency of T3. Was a PM carried out...that could have revealed low cellular T3!

We'll never know, but her legacy should be action on both ME and T3 research...

So very sad!

[Zephyrbear in reply to DippyDame]

I totally agree with the T3 geek bit! I too was getting worse and worse on ever-increasing doses of T4 and my TSH was refusing to move from 4.69, so my lovely old endo decided to try me on a trial of T3 and I got most of my life back. I have since done the Dio2 test and there is no anomaly there and yet I was not able to convert the T4 into T3. I now take a very small dose (25mcg) T4 but my T3 dose is now 55mcg/day. My blood tests regularly induce apoplexy in the medical profession, but I feel fine!

I spread the message far and wide too, especially among the new registrars that seem to regularly turn up at our surgery for their 6-month stints when I need to contact them! Hopefully, they’ll leave slightly better educated as they move on… doubt it, but hey, I tried!

[TiggerMe Ambassador]

Brilliant interview with Sarah Boothby (Maeve's mum) on BBC Breakfast this morning (8/10) 7.16am which will chime with all of us

[Morning_gl0ry]

thank you for raising this subject, I too feel very strongly that I would not be here and have what could be called a quality of life if I had not self researched and decided t3 was the way forward for me. I would just like to share also what my endo said to me last visit from whom I am due to be discharged from once my levels reach ‘acceptable’. He told me, and bare in mind he is the top guy in the department on thyroid, that he has never proscribed a higher dose of more than 25mcg of t3 to a patient…never. That made my heart sink for everyone…and this is not just a belief in the uk, I believe it is a common belief in modern medicine. It concerns me as to why there is almost a paranoid sense about t3.

[DippyDame in reply to Morning_gl0ry]

there is almost a paranoid sense about t3.

That pretty much sums it up!!

They seem terrified that patients taking T3 will drop dead at their feet and that the blame and fall-out will lie with them

I wrote a document, filed in my notes, stating that I take full responsibility for both my use of high dose T3 and for any consequences. It has stopped them trying to adjust my medication based on unreliable lab results.....previously the cause of decades of my failing health

The whole issue is madness that has developed from ignorance and a belief that they know best. I don't care how high up the medical greasy pole they have managed to climb....it doesn't excuse a blinkered, close minded attitude.

[Morning_gl0ry in reply to DippyDame]

I agree up to a point with you DippyDame, but I can’t help but think it is more calculated than that. When I asked the endo for a T3 trial it was denied on the grounds of it being not necessary/safe/effective etc but when I announced that I had sourced my own t3, absolutely no mention of any concerns and no caveat except for monitoring my levels, which they agreed to continue to do. The endo actually seemed quite nonchalant about it and said fine yes I have several other patients who source their own its not a problem. So these cautions re heart health for example didn’t appear to be that much of a concern to my endo and as my research concluded, t3 could actually be deemed helpful to heart health and diabetes to name another. I think the whole thing is tied up with big pharmaceutical companies pulling the budget/costing strings and that is why we are left struggling.

[DippyDame in reply to Morning_gl0ry]

I don't think it is entirely tied up with big pharma/ cost though undeniably that is a factor.

What strikes me is the nonsense spouted by many medics and if they don't understand T3 then they are not in a position to fight to change things....and change is vital!

Cost is a good excuse for not venturing into T3 territory......vast sums are spent on other treatments, operations and so on. I've seen very many thousands of pounds spent on a distant family member for a complicated joint replacement sourced from abroad.

Fair enough.....but we need a level playing field which includes fairer priced T3 which is basically a fairly cheap medication.

[serenfach]

When they say "lessons will be learned" what they mean is "lift the carpet and sweep it under". I think a lot of it is ego - I am a Doctor, therefore do not question me!