United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

The Leeds service is part of a mental health trust. It was disingenuous of the sector to remove those critical words 'mental health' from their trust titles - about 15 years ago.
https://www.leedsandyorkpft.nhs.uk/our-services/
Its distressing that the family have been mislead into beleiving that the Leeds service will help them.

 

Etta Loveday
@EttaLovedayME

Update about Millie Petition https://change.org/p/save-millie-s-life-royal-lancaster-infirmary-must-stop-causing-millie-harm… #MillieSevereME #SevereME #pwME #saveMillie #BringMillieHome #DontLetMEDie #ExposeMENow

2:00 PM · Apr 29, 2024

 

We have had several long conversations with Pierre today #SaveCarlasLife including one just now, which was quite distressing.

The situation is becoming intolerable for her and the family. We will have some major updates in the morning so please keep an eye on our social media.

 

ME/CFS and Polyneuropathy - URGENT

The NICE Guideline NG206 MUST be adhered to. Failure to do so results in avoidable harm which can be life threatening. This thread is evidence.

I am a severe ME/CFS patient of 12 years. Last September I was referred by my GP to Neurology with suspected sudden onset peripheral neuropathy for a conductivity test. My symptoms were symmetrical on both hands and were of sudden onset while in a prolonged period of PEM induced by my care providers failure to provide training of their staff into ME/CFS which resulted in harm. I have a CQC reference in respect of this and their failure to comply with s20 Health and Social Care Act (Regulated Activities) Regulations 2014.

Neurology dismissed my symptoms as a trapped nerve, no further investigation, even refused to write to me regarding the consultation! That's no doubt because I am a woman with ME/CFS.

I discovered this, this morning while reading the Chief Medical Officer's Annual Report 2021 while looking through this NHS Constitution: 10 year review - GOV.UK (www.gov.uk)

My symptoms EXACTLY match those of Distal Symmetric Polyneuropathy. He didn't even look at my iist of medications, he was so dismissive. Luckily my carer was with me so she can give evidence.

The hasty application for DOLS guided by liaison psychiatry without investigating the differential diagnosis is causing avoidable long term harm and trauma inducing.

ICD-11 for Mortality and Morbidity Statistics (who.int)

13 February 2023

Diagnosis and management of patients with polyneuropathy - PMC (nih.gov)


8 May 2019

Diagnosis and management of sensory polyneuropathy | The BMJ

is arguably a notifiable incident by the hospital trust to the CQC as required under s.20. There is time limit to it.

Symptoms include:

"A diagnostic screening tool using onset, distribution and systemic features can be used to accurately identify patients with inflammatory neuropathies. Patients who screen positive using this tool have 1 or more of the following features: acute or subacute onset (< 8 wk to reach plateau), non–length-dependent distribution or at least 1 systemic sign (skin changes, weight loss, autonomic symptoms, fever and chills, or joint inflammation).7 The screening tool is 96% sensitive and 85% specific in identifying inflammatory neuropathies, including Guillain–Barré syndrome, CIDP (and its subtypes), multifocal motor neuropathies, vasculitic neuropathies and paraneoplastic neuropathies.7 Systemic findings in a patient with an axonal neuropathy would also prompt referral to a neuromuscular specialist. Prompt recognition and treatment is important as prolonged duration of disease without adequate treatment of these neuropathies can lead to serious morbidity."

Symptoms also include gastroparesis.

ETA: Government review to create a more open healthcare system - GOV.UK (www.gov.uk) 16 April 2024

 

What on earth is going on ?
Update from X

 

Update on May 28, 2024

Etta Loveday
@EttaLovedayME
Update about Millie #BringMillieHome Petition https://change.org/p/save-millie-s-life-royal-lancaster-infirmary-must-stop-causing-millie-harm… #MillieSevereME #SevereME #pwME #saveMillie #DontLetMEDie #ExposeMENow

1:37 AM · May 28, 2024

 

I am not commenting in any way on the specifics of this case as I unaware of the detail, however in general nasogastric feeding is not seen as an ideal long term solution, rather weeks not months, and generally peg feeding is seen as a better longer term option. Both are reversible, also peg feeding may mean that it is easier to combine the tube feeding with some oral feeding/drinking if that is a possibility.

 

From a post on X
Millie is having PEG tube fitted today and nurses are trying their best to make this go as smoothly as possible .

 

Sounds good. Hats off to those who have managed to keep her alive.

 

Significant thread on X from Dr Claire Taylor
https://twitter.com/user/status/1800313931376025634



If someone is bedbound with #longcovid & hospitalised, withholding urine bottles will not make them walk to the toilet. They will wet the bed. Withholding feeding will not make them eat. They will starve.
Sometimes this job hurts my soul at the lack of human rights.#NHS

If you are the consultant in charge don’t ask them why they ‘don’t want to get better’
If you are the nurse in charge don’t watch whilst your nurses torture the patient messing around with not feeding or toileting.

We NEED to talk about these things.


I know it is not an easy job in hospitals but there is no excuse for this.
Patients are terrified of being sectioned. They don’t want to be in your hospital. But they are starving and have no option.

Severe #MECFS is not talked about enough. Maybe if it was, people would not endure this sort of torture in hospitals.
It keeps happening over and over and over.
It needs to stop.
Do you really think the patient doesn’t want to get better having lost everything including dignity

We need to educate from medical school to consultant level on the pathophysiology involved in long Covid and ME/CFS.
The new NICE guidance is not working for many people. It is just ignored. This is an emergency. There have been far too many cases this year and it’s only June.

Long Covid and ME/CFS are not just a bit of tiredness. It’s not deconditioning. It’s a breakdown of many of the multiple systems that provide the body with energy and oxygen. It’s a reduction in blood flow to the brain. It’s necrosis in the muscles on mild exertion contd

It’s inflammation in the brain. It’s inflammation in the muscles. It’s an immune system that’s both overactive but not functioning properly. It’s viral persistence. It’s abnormal clotting. It’s dysautonomia. It’s mitochondrial dysfunction. It’s a complex multisystem illness

Sometimes it’s myocarditis. It’s blood clots. It’s joint pain. It’s neuropathy.
It’s so many things.
It’s like a crossover of Vasculitis, lupus, MS, dermatomyositis and many more.
It lacks an antibody or scan findings.
That’s all that separates it from the above conditions.

One day it will. I hope people look back in shame.
I just hope it comes soon because how can we expect people to endure the above?
Severe ME/CFS is you. It’s me. It’s anyone. It’s ordinary happy people struck down in the prime of their life.
How would you like to be treated?

Please share and tag the people who need to see this.
Yours sincerely
An absolutely gutted Doctor

 

I absolutely agree with the first half of what is said.
But it will be completely ignored because of the second half.

We need to stick to evidence.

 

3:20 PM · Jun 18, 2024

https://twitter.com/user/status/1803070243947876623



Etta Loveday
@EttaLovedayME
Millie has been an inpatient in hospital for 20 weeks.
#BringMillieHome #MillieSevereME #saveMillie #SevereME #pwME #DontLetMEDie #ExposeMENow Petition https://change.org/p/save-millie-s-life-royal-lancaster-infirmary-must-stop-causing-millie-harm… Fundraiser https://gofundme.com/f/millie-and-her-family

 

It seems Millie may be getting home .
There's tweets that are almost identical to the one above with this info .
Hopefully it all pans out

 

I have uploaded a review of nutritional problems in severe ME/CFS to the open access journal Qeios. It should be available by Monday. Qeios articles are open for anyone to comment or review. Commenters may need an academic institution address though but I am not sure. The Word file is attached.

 

That's brilliant. An incisive summary of the problem, excellent recommendations, and very, very welcome. (As someone who has suffered from this problem, albeit mildly, thank you so much.)

A few things that occurred to me while reading through:

In general I'd agree with that although a dietitian ignorant of the severe limitations of a very severe pwME may cause harm. NG206 says "Refer. . . a dietitian with a special interest in ME/CFS" (1.12.22), although of course those with a "special interest" may be BPS brigade.

Does NG206 actually specify this qualifier? I don't remember it, and a quick search for "constraint" and "service" doesn't immediately show it.

Speaking solely for myself I don't find it "traumatic", it's just extraordinarily difficult, and would require hospitals making the kind of environmental adjustments that I think are entirely reasonable and would probably be made routinely for (say) autistic children but most NHS hospitals are entirely unwilling to accommodate in ME cases.

Perhaps, but if it is that clinically significant the OH needs to be treated, and as far as I'm aware OH usually isn't the problem. What there needs to be is an intelligent weighing up of the increased aspiration risk vs exacerbating the orthostatic intolerance of a very severe pwME with the attendant distress that may cause.

Also noticed a couple of typos (e.g. the '0' that should be a ')' at the end of the first paragraph on p6.)

 

Yes agreed. There are plenty of very severe ME patients without a specific OI diagnosis. In their case, it’s not necessarily an “intolerance” to standing up, but that standing/sitting is above their energy threshold and causes PEM.

 

The NHS is apparently rolling out a "reasonable adjustment flag" to share details of physical, sensory, communication & other impairments across the NHS.

Tweet: https://twitter.com/user/status/1803035418528518212

("We have started to roll out the Reasonable Adjustments Digital flag across the NHS and publicly funded care, helping it to become part of a standard approach to care and treatment for all disabled people."; June 18 2024).

More info: https://digital.nhs.uk/services/reasonable-adjustment-flag

Apparently the flags are to be added to a patient's record by a GP. One of the examples given is "a patient who is sensitive to loud noises and would be more comfortable in a low noise environment".

This post has been copied and discussion moved to:
United Kingdom: NHS Reasonable Adjustments Digital Flag

 

The direct Qeios links are:

Link: https://www.qeios.com/read/T9SXEU
PDF version: https://www.qeios.com/read/T9SXEU/pdf
and the DOI: https://doi.org/10.32388/T9SXEU