The Mirror: 'My daughter's ME was so severe it killed her - Dragons' Den ear seed scandal is a disgrace'

[Countrygirl]

https://www.mirror.co.uk/tv/tv-news...cTSN5vJowFMWdS2BNvn67c8r1TbygzXuBVoPdzj9Dt-QY



EXCLUSIVE:

'My daughter's ME was so severe it killed her - Dragons' Den ear seed scandal is a disgrace'

The BBC's decision to reinstate a Dragons' Den episode with controversial, unfounded medical claims has sparked fresh outrage from the ME community. Clare Norton is disgusted by the decision after tragically losing her daughter Merryn to the disease in 2017



Merryn Crofts fought tirelessly for doctors to listen, but her mum Clare Norton says she was failed at every turn

Ellie FryDeputy Online Features Editor

• 12:10, 31 Jan 2024

A grieving mother has blasted BBC Dragons' Den after they allowed an entrepreneur to pitch an 'ear seed' product that she claimed helped her recover from ME.

Clare Norton is the mother of Merryn Crofts, 21, who became the second person in the UK to have ME (myalgic encephalomyelitis) listed on their death certificate in 2017. The fun-loving drama student spent the last three years of her life bed-bound and weighed just five stone when she died, just days after her birthday.

But last week, the BBC invited businesswoman Giselle Boxer on to Dragons' Den to promote an 'ear seed' product that she claimed helped her recover from ME. Ms Boxer had previously claimed that ME sufferers are "stuck in a negative mindset" and are "bogged down with their condition.

In 2017, a coroner ruled that ME triggered gastrointestinal failure in Miss Crofts, who effectively starved to death. The landmark inquest concluded that her cause of death was starvation caused by a withdrawal of supportive nutrition, caused by ME.

The "beautiful" drama student was "skeletal" when she died after what her mother describes as a string of unforgivable medical failings. In August 2011, Merryn, then 15, was diagnosed with hives and swelling after coming back from a family holiday in Mallorca. Tests in early 2012 showed that she had contracted glandular fever at some stage - a known trigger of ME.

As Merryn's health deteriorated, Clare fought tirelessly for answers from doctors, paying for a private ME diagnosis before finding a "brilliant" NHS doctor who specialised in the disease. After finally finding someone who took ME seriously, Clare's hopes were dashed, as Merryn's NHS hospital team would "never listen" to the ME specialist because he wasn't in-house or local to their area.....................................

 

[lenora]

Another loss. I'm very sorry to hear about your daughter, Ms. Norton. My sympathy to you and all your other family members.

This ear seed business is utter and complete nonsense. I should know....I've had ME and other neurological illnesses for probably 40 years, maybe longer.

How frustrating to hear such people tell us that we're "stuck in a negative mindset." How would she know what we're stuck in? Like all people, I have good days and bad days (not many). I'm satisfied with my life, and yes it did take time to reach that place....but it happens. Also, I know plenty of people that feel the same way. It's not a chosen way of life, but we do make something of it and some of us are far more ill than others.

Some are blessed with better doctors than others.....some of our doctors die even though they're excellent. Please don't tell me that a seed in my ear (3 areas, I believe) will cure me of this illness. It won't and I'm very familiar with acupressure. Acupressure helps, me at least, but it may not help someone else on the forum.

We're all individuals and the illness affects us in individual ways. Just like some vitamin may help someone else, but does nothing for me....again, I'm an individual.

Yes, some of our peers die of intestinal problems, but I'm firm in my belief that ear seeds aren't going to help. If so, why aren't they used for the massive eating disorder problem we have in our countries?

Just go away and don't bother me, Ms. Boxer....you modern day charlatan! You bog me down.

 

[Hope_eternal]

https://www.mirror.co.uk/tv/tv-news...cTSN5vJowFMWdS2BNvn67c8r1TbygzXuBVoPdzj9Dt-QY



EXCLUSIVE:

'My daughter's ME was so severe it killed her - Dragons' Den ear seed scandal is a disgrace'

The BBC's decision to reinstate a Dragons' Den episode with controversial, unfounded medical claims has sparked fresh outrage from the ME community. Clare Norton is disgusted by the decision after tragically losing her daughter Merryn to the disease in 2017



Merryn Crofts fought tirelessly for doctors to listen, but her mum Clare Norton says she was failed at every turn

Ellie FryDeputy Online Features Editor

I just can’t bare to read stories like this!! Why?!?!? Who do we go to to make this stop!?? This is terrifying and completely unacceptable that people who are suffering are treated this way. I feel this mother’s pain. As a caretaker I feel responsible for making people listen and understand but as hard as I try, they aren’t. I cry a million jagged tears every single day bout this. Why aren’t we being heard? I need to do something. I’m in the US, maybe start with our senator? Go to NIH? Anyone have any suggestions? I can’t take it anymore. The utter devastation this illness dispenses on the inflicted needs to be taken seriously. This has got to stop.

 

[hapl808]

I’m in the US, maybe start with our senator? Go to NIH? Anyone have any suggestions? I can’t take it anymore. The utter devastation this illness dispenses on the inflicted needs to be taken seriously. This has got to stop.

This was a recent hearing about Long Covid (and MECFS was mentioned). You can see the senators that seem most concerned (Roger Marshall, Bernie Sanders) and the others that are involved. Tim Kaine has said he has Long Covid, but he seems pretty mild. My impression is Roger Marshall has a family member affected severely and as a physician is angry that he can't do anything and there's no urgency. I don't think he quite gets where the barriers are, but the main thing the senate can do to start off is appropriate billions per year to study these illnesses. That's what they did with HIV - and it was laughed at before they did that.

https://www.help.senate.gov/hearing...advancing-research-and-improving-patient-care

 

[Down but not out!]

https://www.mirror.co.uk/tv/tv-news...cTSN5vJowFMWdS2BNvn67c8r1TbygzXuBVoPdzj9Dt-QY



EXCLUSIVE:

'My daughter's ME was so severe it killed her - Dragons' Den ear seed scandal is a disgrace'

The BBC's decision to reinstate a Dragons' Den episode with controversial, unfounded medical claims has sparked fresh outrage from the ME community. Clare Norton is disgusted by the decision after tragically losing her daughter Merryn to the disease in 2017



Merryn Crofts fought tirelessly for doctors to listen, but her mum Clare Norton says she was failed at every turn

Ellie FryDeputy Online Features Editor

I expect nothing better from the Jimmy Saville Corporation, or B***** Biased Corporation, to give it another name. Lots of these people went to Oxford and Cambridge don't you know! High as kites on diversity and inclusion, you can always rely on them to put the boot in when genuine integrity is required.

 

[Hope_eternal]

This was a recent hearing about Long Covid (and MECFS was mentioned). You can see the senators that seem most concerned (Roger Marshall, Bernie Sanders) and the others that are involved. Tim Kaine has said he has Long Covid, but he seems pretty mild. My impression is Roger Marshall has a family member affected severely and as a physician is angry that he can't do anything and there's no urgency. I don't think he quite gets where the barriers are, but the main thing the senate can do to start off is appropriate billions per year to study these illnesses. That's what they did with HIV - and it was laughed at before they did that.

https://www.help.senate.gov/hearing...advancing-research-and-improving-patient-care

I’m going to start getting everyone I know to sign a petition and it a letter over to them. At least it’s a start. Thank you for your note and listing the senators involved. I need to take some sort of action. This is a starting place.

 

[vision blue]

Where can I learn more about the nutrition problems and starvation that affected her?

 

[Countrygirl]

Where can I learn more about the nutrition problems and starvation that affected her?

I am trying to think of an answer for you. It was in newspapers of course and on FaceBook where her mum writes about it.

In ME, as you know, the starvation results from a combination of gastroparesis and MCAS. Both are treatable. I know some of Dr Weir's patients who aren't bedbound and therefore come to my home to see him at his UK clinic in the SW have NG feeding tubes. Others have NJ, PEGS or TPN.

Unfortunately, the majority of the medical profession are so indroctrinated with the BPS cabal's dogma that ME is a non-illness that starving patients are denied feeding tubes and the MCAS is left untreated, so the patient dies slowly of starvation.

I personally know of too many who have died this way but when the death certificate is signed ARFID, a mental health problem where people refuse to eat, is recorded as the cause of death and not ME.

 

[vision blue]

@Countrygirl Thanks much i actually do not know the causes ofvstarvation in cfs/me. I have not had to deal with it before (tho underweight and weight loss) but now i do and need info before its too late. I was just in ER and observationnin hospital for GI Too much to explain but its related to a consequence of this thing

So ir doesnt specifically need to be this persons story but if you have some places i can read about what happens with starvation in us that may helpmalot and even save a lifevif im being dramatic.

Thanks
Edited for p.s. For the mcas angle whichbi have id like to get facts straightbon its connection because will be having virtual sppt with my allergist whoni se for that and want to ask forwhatever might help with this. Should inadk for periactin? I dont want to start messingvwiyh my neurotransmitters tho.

 

[Countrygirl]

@Countrygirl Thanks much i actually do not know the causes ofvstarvation in cfs/me. I have not had to deal with it before (tho underweight and weight loss) but now i do and need info before its too late. I was just in ER and observationnin hospital for GI Too much to explain but its related to a consequence of this thing

So ir doesnt specifically need to be this persons story but if you have some places i can read about what happens with starvation in us that may helpmalot and even save a lifevif im being dramatic.

Thanks
Edited for p.s. For the mcas angle whichbi have id like to get facts straightbon its connection because will be having virtual sppt with my allergist whoni se for that and want to ask forwhatever might help with this. Should inadk for periactin? I dont want to start messingvwiyh my neurotransmitters tho.

I have attached Drs Weir and Speight's paper on malnutrition in ME,if that is of interest.

A number experience total gastrointestinal failure and require TPN while others have gastroparesis and/or MCAS. They need a NG, NJ or PEG.

The feed often isn't tolerated but warming it to body heat enables better absorbtion.

Medication to calm down the MCAS flares are necessary.

Unfortuantely, hospitals are refusing in a worrying number of cases to provide tube feeding so the patient dies. We have a number of ongoing cases now. Some have relied on TPN feeding for years and the hospitals are removing them and leaving them to starve to death. They seem to be adopting the principles of Nazi Germany and decide that only those considered of most worth can be enabled to survive.

 

[vision blue]

@Countrygirl

Awesome thanks. But when clicked on file, i just see a bunch of random characters

 

[alivenotkicking]

@Countrygirl

Awesome thanks. But when clicked on file, i just see a bunch of random characters

See if the online version works for you:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/

 

[alivenotkicking]

So ir doesnt specifically need to be this persons story but if you have some places i can read about what happens with starvation in us that may helpmalot and even save a lifevif im being dramatic.

You're not being dramatic at all. About 4 years ago, eating and drinking enough to keep myself properly nourished and hydrated finally became too taxing on my body, and ended up in the hospital severely starved and with a massive fecaloma on top of it, as a result of dehydration (TMI, perhaps, but it's something we have to be aware of and that highlights the importance of a timely treatment). If not for sympathetic doctors, even if they didn't necessarily understood or entirely believed the disease, I would definitely have died.