‘Our Daughter’s Death Was Preventable’ Calling for Change in the Care of M.E. Patients

[@lunarobinson5837]

I’ve been ill for over 4 years now due to covid. I’ve been bedridden with severe ME for 2 years in my early 30s. Everyday feels like a living death. We are desperate for our lives back. We NEED healthy allies to help us. We are too sick to help our selves.

[@kathrynedwards1092]

Same here. X

[@SarahWilding]

Thank you so much for doing this on GMB. Thank you to Sarah and Dr Shepherd. Such a tragic loss to have had to endure. Rest easy Maeve

[@GM-pn2bi]

Thank you for doing this segment. The issue needs more attention.

[@Mel87y]

So sad so sorry the system failed you 😢 ME is a horrendous condition and really destroys lives I pray for everyone suffering ❤

[@shennel7304]

I have m.e/cfs and the only treatment center in my area was taken away because there was no funding, more funding needs to be put into this because its a serious condition, i have fibromyalgia ontop aswell, im in pain all day everyday, and its a real issue, the tiredness is unlike anything a normal healthy person will ever feel, i really hope the government start something with this thats come out over maive, its such a sad story

[@janedowsett5059]

same in my area too

[@shennel7304]

@@janedowsett5059 it's really bad ain't it, it's not fair to us

[@farahsummers1171]

I have both 2. Sending you lots of love ❤

[@EzzyFallsOut]

Thank you for this. The reality of how ME is a serious disease and can be life-destroying needs as much media exposure as possible after years of it being portrayed in the media as a behavioural problem, malingering, or even imaginary. Huge thanks to the team, and huge condolences, and kudos for her bravery, to Sarah Boothby. (Edited for typo)

[@estellekelsall322]

I was in Royal Shrewsbury Hospital last year & the nurse had Never heard of ME/CFS. Fortunately I wasn’t there for that.

[@missmuffet3874]

A lot of nurses are just so unintelligent these days. I suffered from hypercalcimina due to Primary Hyperparathyroidism a few years ago. The amount of the nurses that asked me what it was and they didn’t know what parathyroid glands were was astounding.

[@pennir8834]

My GP told me to just except it and my life would be easier! My counsellor/therapist after weeks of talking about my suffering told me he didn’t believe in it!! Many professionals don’t validate suffers that loose their health to this horrid condition, I’m hoping and praying it changes, I won’t hold my breath though 😢

[@HattyGardner]

My heart bleeds for this family ❤

[@SadieKay1]

I've mild M.E. thought to be brought on by my t1 diabetes. It's so misunderstood. I've had it about 15 years. I work full time and travel but it can result in being exhausted for a long time afterwards. It can be very debilitating. I don't drive because I get waves of tiredness. I make silly mistakes and forget a lot. I need days in bed. But I'm lucky it's a mild case. I wish it was more understood.

[@heathersoper6923]

😮 this is shocking

[@lindawigman6872]

Its happened before im afraid. People dont understand ME and that some are severe and die. But this was neglect by the Nurses and Doctors.😢

[@KarenHumphreys-t1o]

God bless mauve I'm so sorry this happened to her

[@sherimillman53]

So sorry for your loss

[@scottfw7169]

I'm an American having ME since 2005 and my Dad has had it since the 1980s being retired from the US Navy with it after several years of military doctors at places like Bethesda and Walter Reed trying to figure out what was happening and where it came from. I still remember Dad being told, "There's something wrong with your blood but we don't yet know what it is." Is it just me, or do psychiatric delusions Not make something wrong with your blood???? 🤔 There is science, actual, testable, peer reviewed, science, since at least the 1980s showing that ME is a physical thing which screws with the cellular mitochondria processing sodium and nutrients, screws with the body's processing of amino acids, screws with the immune system's t cells and b cells, and on and on, AND YET a number of health care professionals all around Earth Can Not and Will Not let go of their preconceived notions. I swear the practice of medicine is more of a 'faith-based religion' than the actual faith-based religions are.

[@regreg5416]

Well said the psychologisation of M.E Is one of the greatest medical scandals of modern medical history. It is, and I use the current tense deliberately, nothing short of officially sponsored Gaslighting.The machinations, such as PACE trial result manipulation are now becoming known on the mainstream, hopefully we can get it turned around and current and future research can concentrate on the actual physical condition and not waste millions of Pounds like they did on the failed CFS Gaslighting experiment

[@MOJORAPSCALLION]

I have ME since 1994, a long time, I also have a whole host of other conditions, it’s utter torture. Been on TPN 3 times and have a Jejunal feeding tube for fluids, meds & feeds and a draining G tube (vomiting) I caught glandular fever and got bitten by a tick and was untreated historically back then leaving me in a terrible and sometimes pitiful state myself and many hundreds of thousands with this dreadful condition. My heartbreaks for Maeves (apologies if I’ve spelt it wrong) love to her parents & family such a young life terrible. RIEP Angel 😇 🙏🏼🩵🩷

[@regreg5416]

The scandal of the Psychologisation of this condition is a disgrace and had caused great harm to many for decades. Dr Sheppard has worked for years to obtain answers to many of the scandalous element's of the wholly disgraceful setup Sarah has done a wonderful job here of explaining just some of the trauma felt by just one parent. Her bravery and compassion shine through. The architects and disgraceful cabal behind the psychologisation "lets not medicalise this":of this condition may of been able gaslight their own professionals and bully many others into following their entirely inappropriate line of research and treatment but they forgot to factor in the resistance of good people and, perhaps the strongest element, the love of a parent. All regimes fall eventually hopefully this is the tail end of the horrendous M.E. CFS psychologisation era, long, long overdue.

[@scottfw7169]

Seems to be a long-running thing with doctors, _"Since WE don't yet know what the physical disease is, YOU obviously have a mental condition."_

[@regreg5416]

​@@scottfw7169now that they are starting to be caught out using M.E or CFS ss a 'I don't know but cant admit that' diagnosis they seem to of shifted to using ' FND ' as the 'Don't realky know " diagnosis

[@regreg5416]

​@@scottfw7169this case it actually more sinister than that. M.E. Is a physical illness but, as you have observed, with no known cause or known cure. This created a problem for the government in that there was a potential for large numbers of unemployed with a chronic illness with no known cause or cure. How do you handle that situation? In the words of Harry Enfield 'Simples" You find a group of willing Psychiatrists and Psychologists, 'Psyches' for short, reward and promote them handsomely to reclassify the physical condition M.E. as a Psychiatric condition CFS. Once designated as a Mental condition it was relatively cheap to cone up with a 'treatment' plan. Unfortunately the plan they came up with consisted of not just inappropriate treatment but treatments that actually caused harm to the patients. A number of scandals along the way most noticable the uniquely part sponsoring by the DWP of PACE Trials (look it up) which were supposed to support the DWP arguments and GET, CBT treatments but unfortunately didn't, 'Oh dear what can we do? ' Simple falsify the results. Check out PACE trial scandal. Many other actions were taken which maybe saved money short term but has cost not only patient lives but has deliberately classified multiple people with a mental condition, has wasted years of potential valid research time and resources, who knows how valuable that may of been when Covid surfaced. All in all a scandal ridden journey based on short term economics and aided and abetted by self serving 'Psyches ' who's personal progression seemed to take precedence over patient wellbeing. One of the greatest health scandals

[@regreg5416]

This is a reply I gave to another question but may be worth adding to this thread: "And that is the whole point. It is a very serious physical health condition but it was cheaper the government to have it classified as a mental health issue, in conjunction with leading psychiatrists they had relatively cheap treatments established which included GET and CBT unfortunately both of the treatments actualy caused patients harm, the GET treatment was a form of exercise training but the big problem with that us that one of the main symptoms of M.E. is P.E.M (Post Exertion Malaise) essentialy any exercise causes serious problems but not always immediately, often it can be a day or two later. Exercise is the worst treatment you could give, its almost a form of torture for M.E patients, worse than that it was also imposed on children with M.E and if parents refused to allow it they could be forcibly arrested and even sectioned for non compliance. So you may not of heard about it before but the whole scandal is starting to get into the mainstream media. Many earlier cases like this one still yet to be reported. "

[@scottfw7169]

@@regreg5416 From 2009 to 2015 I was on Facebook and in some support groups for both fibromyalgia and ME/CFS. When news about the PACE study of Graded Exercise started to become available we looked it over and started making noise, and ultimately a lot of noise, because its results had only incidental relationship to real lives lived with ME/CFS. My Dad had had it since something like 1982, and myself since 2005. Interesting reading about that study on a website named Sense About Science; 2 articles dated March 21, 2016, an editorial overview and a longer full analysis, if it's not something already read and saved, might want to go do that..

[@honorburza9110]

Raelan Agle who herself had CFS has interviewed lots of people over the years that HAVE recovered from ME/CFS/LC people are recovering from being severe.

[@MymzieLo]

ME is a terrible disease and it's still too often dismissed by the medical profession. Maeve shouldn't not have gone through all that. Hopefully the way we treat patients with ME will improve in a none distant future.

[@ytlol7244]

Maeve sounds like a chip off the old block., Sarah. Wonderful women and it is so distressing to hear of Maeves loss due to ME and its associated cultural inhibitors in some contexts. Optimism from Dr Shephard and Maeves capable and courageous mother.

[@meganstewart9062]

The NHS is a big mess and needs a reform now to improve .

[@mariannehavisham8323]

My dad has ME he is actually remarkably healthy now and the condition is totally managed but he was terribly sick before and almost died. At nearly 70, he looks younger now then he did in his forties. As a middle aged man he looked really old due to poor health. He dropped to 7 and a half stone, lost his job illegally which he had to challenge in court, couldn't walk accross a room for a year, his white blood cell count was so low we were warned he could die, i remember seeing him walk accross the road towards us once after work when he was 7 and a half stone and his skin was grey and he looked like a walking corpse, he was in his 40s and he looked old and like he was about to die, there was another occassion, he became physically dependant on morphine, he ran out of meds the doctor wasnt avaliable, his withdrawals were so severe we thought he would die, he collapsed and was sweating and shaking and so desperately thin. He is a committed Christian and he couldn't attend church for months due to poor health. It caused strain on his marriage which eventually broke down

[@CatCat-v5g]

Why is the mum smiling and laughing throughout the interview?

[@missmuffet3874]

Me thoughts too. Very strange behaviour, I would have said she could have been nervous being on television but she did seem very confident.

[@SusanDean-n7x]

Misunderstood and underestimated disease. My son has had this for years. Despite going to 2 specialist clinics bham and derby no answers. It is heartbreaking. I'm so so sorry for your loss and for Maeve losing her life to this.

[@donnajohnson8035]

So tragic but I’m confused; could Maeve not have had shakes?

[@ameliafatface7995]

And a second opinion?? 😮

[@Shelleysnail]

She lost her ability to swallow. The hospital she went to wouldn’t put in a stomach tube despite Maeve being admitted for malnutrition 3 times. They just sent her home saying they didn’t have the guidelines to tell them how to deal with it, and imo essentially caused her death.

[@supersoph2305]

The problem isn't what is being fed , it's the swallowing. The body is so depleted of energy the muscles that control swallowing weren't working. Her mam tried a few ml a day of syringe feeding knowing she wasn't getting enough into her. Maeve went I to hospital three times and was refused the tube straight to her stomach that would have saved her life . They still thought ME was a mental illness despite it being proven as a very real, physical disease. So the shakes could have been put in the tube straight into her tummy without the need for swallowing and she wouldn't have starved to death. It's actually scary as an ME sufferer that this is how we are treated in hospital. This poor family. Her mama is so brave and beautiful, I can't imagine losing a daughter like this and it was totally preventable. Shame on those drs, they should be struck off.

[@Shelleysnail]

@@supersoph2305 agreed, it’s a completely preventable tragedy and a case for the doctors being reviewed by the BMC and the NHS sued for their lack of plans and care

[@audbod4140]

My question would be was Maeve tested for myasthenia gravis? My heart goes out to this poor family. This story disgusts me. NHS should be ashamed of themselves. I am struggling with me/cfs for 4 years now and very little help.

[@scottfw7169]

Oh, interesting question!

[@sarahfellows3074]

I love Trisha, I think she is the most genuine celebrity ever ❤️

[@SusanDean-n7x]

Oddly a lot of sufferers seem to be highly motivated and push themselves to achieve. Drs have no idea, my son gets told often that it's all in his head. Drs meed training on this terrible Life robbing disease.

[@sparklingwater1430]

Wow I’ve never heard of this before

[@regreg5416]

And that is the whole point. It is a very serious physical health condition but it was cheaper the government to have it classified as a mental health issue, in conjunction with leading psychiatrists they had relatively cheap treatments established which included GET and CBT unfortunately both of the treatments actualy caused patients harm, the GET treatment was a form of exercise training but the big problem with that us that one of the main symptoms of M.E. is P.E.M (Post Exertion Malaise) essentialy any exercise causes serious problems but not always immediately, often it can be a day or two later. Exercise is the worst treatment you could give, its almost a form of torture for M.E patients, worse than that it was also imposed on children with M.E and if parents refused to allow it they could be forcibly arrested and even sectioned for non compliance. So you may not of heard about it before but the whole scandal is starting to get into the mainstream media. Many earlier cases like this one still yet to be reported.

[@sparklingwater1430]

@@regreg5416 yes I’m shocked at this, thank you for educating me.

[@scottfw7169]

@@sparklingwater1430 If looking up info about stuff is something you like to do, here are some suggestions, with an American slant since that's where I live; a fellow who was/is the Dean of medical journalism at UC Berkley, David Tuller, has done extensive writing across some years about ME, also known as ME/CFS. He has recent articles about Maeve and the inquest, and interviewed Sarah and her father, articles are published several places, including a respected medical blog named Virology. Also, look up a couple March 2016 articles about a study named PACE on a science research website named Sense About Science. My Dad was one of the US Navy's first medical retirements, and I think the actual literal first, with ME in the early 1980s, & then ME hit me in 2005. By spring 2006 it had reached the point of causing what is called brain fog to the degree that one day at work I forgot what a work tool I'd been using for over a decade even did while I was right in the middle of using it. Even at mild levels ME/CFS is definitely some un-fun stuff.

[@heathersoper6923]

All I can say is, thank God the Tories are out because they wouldn’t care to do anything about it.

[@hearmeoutbro]

Glad the Tories are out but Labour aren’t any better.

[@Cactuspractice12]

Sajid Javid was the only politician who was interested in this illness, presumbaly a family member had it, and when he was briefly health secretary he publically commited to addressing the deficit in research for it. This was closest we came to have someone in power with a vested interest in doing something, but because the Tory's were in such a state he was only in that position for a short period. Fingers crossed Labour do something

[@heathersoper6923]

@@hearmeoutbro I think the jury is out, we have to give them a chance. I just wish we had gone back in Europe, coming out was the worst thing.

[@shelleyclements1620]

M.E.? What is this? Everything Today is an Alphabet reference. It sounds horrific!

[@kimerlyhogan6567]

I have the same question. Stop alphabetizing everything.

[@laurenann7094]

Mom said she DID NOT lose the ability to swallow so I don't understand how she starved to death. I can imagine if she went to the hospital and was able to drink they would advise her to go home and drink them. And she did not die if dehydration, so she was drinking. ME does not progress to the point of paralysis like Multiple Sclerosis or Muscular Distrophy. This seems bizarre. Also mom is so cheery in a strange way. Something does not make sense.

[@BoiseLou]

She had gastroparesis and very severe orthostatic intolerance.

[@tashaax1993xanimalloverx]

Is this Trisha Goddard....

[@jewelssunsun9450]

Yes.

[@spiritualsenga9250]

What big pharmaceutical meds was she on? In the beginning…… That’s not the answer!

[@carolgilmour3497]

This sounds so much like FND so, so very tragic

[@BoiseLou]

They can be distinguished as separate diagnoses even when they exist in the same patient. FND can occasionally cause dysautonomia leading to ME/CFS but more often it is the dysautonomia that drives ME/CFS that causes FND when they exist as comorbid conditions. This is due to the effects that dysautonomia and therefore reduced blood flow to the heart and brain have, affecting the HPA axis and sympathetic nervous system.

[@lwo7736]

I love it when Madeley tries to act like a human being with human emotions. Guy's a complete robot and right-wing media have the remote

[@Anniexo-b2e]

More needs doing. I was also completely healthy before getting Epstein Barr virus, caught it last year and now have been housebound for a year. I also have reactions to foods which can be tied into M.E. I’ve had to drop out of uni and can’t take care of myself at 20 years old. We NEED treatment and more understanding. Rest in peace Maeve, I’m so sorry the system let you down. ❤️‍🩹❤️‍🩹