27-year-old died from malnutrition due to severe ME, inquest finds

[@zahrac7876]

There is no support for this, be it severe M.E. or mild. We are left to get on with it. So sorry for this lady.

[@Livingtheinvisiblelife]

My guess is that because it was originally called chronic fatigue syndrome and therefore it isn’t that bad and not deadly. I hate the fact that doctors don’t take the time to actually get educated on this condition. How many people need to die to get the doctors to educate themselves?

[@AnitaDil]

My friend Barbara was diagnosed with ME near 20 years ago. It was never described as CFS. She’s had great support throughout, even her parents who are now aged, got a lot of information given to them. So I guess for some nothing helps.

[@minui8758]

@@Livingtheinvisiblelifethe problem is at the very least 30% of the people who become Drs do so because they are pushed to it by middle class parents, not because they have an intrinsic skill set that makes for a vocation to listening and caring. I’ve encountered almost psychopathic degrees of arrogance among some Drs, as well as brilliance among others. The bad ones aren’t the sort to “waste their time” learning about conditions that they don’t really believe exists

[@Solscapes.]

@@Livingtheinvisiblelife too many are too narcissistic for deaths to matter more than dollars and their ability to get narcissistic supply from gaslighting and exploiting sick people.

[@VintageVegans]

@@AnitaDil so you choose to tell this story instead of honoring the person who died????

[@KateLibby555]

I had ME from the age of 16-31. It robbed me of my youth, relationships, friends, education, career, independence, mental health, dignity, bodily autonomy. ME is unlikely to take your life but it will destroy everything in it, for to live with ME is not to live at all but to merely exist. Please help us.

[@kathybradbury]

Have you been healed?

[@KateLibby555]

@@kathybradbury yes 😃 My stamina now is fantastic, energy is about 80-90% of a normal person. I have been left with some lasting effects from ME; I get travel sick really easily and my immune system isn’t good. I tend to take every virus going around and take longer to recover but I do recover which is a big change to what it used to be. My poor immune system might be due to my unrelated gut issues though as I’ve been having treatment for that for the past couple of months and have seen a big improvement. If you’re interested in knowing the things I did/took that helped me recover then let me know ❤️

[@MyLifeInTheDesert]

@@KateLibby555Kate I am interested in hearing what you did. I have long Covid and I believe these two conditions are related in some way.

[@90klh]

​@@MyLifeInTheDesertthey absolutely are- it's evidence how little we know about the animation of our own cells. We only recognize scars as large clumps of keratin fibers that occur after injury- when in fact a virus changing the shapes of a few proteins could be the "scar" left by infections that can lead to ME/CFS/long covid

[@zoraxye4325]

This story is unspeakably sad. I hope that Maeve's untimely death marks a sea change in the diagnosis, treatment and recognition of ME as a serious illness requiring high quality urgent clinical intervention *irrespective of the patient's age and/or gender.* 27 is way too young to die.

[@MultiAnne36]

The abbreviation ME is used first without the full words. What about the reader that has not heard of ME and doesnt know what it is?

[@julierogers1155]

To Maeve's mother: I am so, SO SORRY.

[@the14thmoonofuranus]

I have been bedridden with ME for 14 years. I've been spoonfed and have to use a bedpan. My NHS ME clinic discharged me after they made me worse. In 2014 I was admitted to hospital because I was too weak to swallow. The Dr there said that she felt many people with ME could do more than they think they can and many were faking their illness. My husband has ME too, he is regularly bedridden and too ill to care for me. Yet he has been declared fit for work by the DWP, despite not being able to work for 30 years. I have been told that I am bedridden for attention, that I enjoy having carers, that I'm not trying hard enough, that I should "just get myself up out of bed"... If I was going to fake an illness, I certainly wouldn't choose one that people didn't believe in!

[@kylbiggs4654]

Your last sentence says it all. No one would ever want to suffer like this.

[@cheryl5994]

I GUESS SOME WOULD SAY THAT BECAUSE IF YOU CAN'T SEE IT ETC. ETC. ETC. NOT WORKING FOR 30 YEARS IS A DRAIN ON THE BENEFITS SYSTEM, IT'S NO WONDER HE'S BEEN DEEMED FIT FOR WORK.

[@KateLibby555]

@the14thmoonofuranus appeal the DWP's decision!! ME doesn't fit the questions in the assessment (thank you Tories) so we all pass the fit to work test. He should get it under appeal but I would strongly advise seeking advice from any local services who can help people file in claims for sickness benefits. Also be careful if the say to you that he HAS TO attend the appointment or he will be found fit to work. It's a trap. I struggled to make it to my appointment but I went and they used that against me as evidence that I was able to go out to work if I could go out to attend the appointment. You need to get an advocate from your local services who speak on his behalf at the appointment stating that he is too sick to attened.

[@Solscapes.]

Narcissists get too much supply from gaslighting for invisible illnesses to get treated properly.

[@minanathans6005]

​@@cheryl5994 do you think that's something a normal person says in this situation? Because it's not. I don't think the Internet has been good for you.

[@nielszindel1151]

I know ME is hard to understand,, but give us dignity. Maeve was only 27, I was very ill at her age with ME and I was so lonely. Illness is a tough gig but the medical professions attitude to ME has made it a hundred times worse mentally..give us the dignity you give everyone else. Delia Morris. (I know there are doctors who do treat ME patients well and that is to their credit considering the attitude of their colleagues.)

[@Padraigp]

Does not seem that hard to understand ...part of your brain is chronicle swollen right? Why aren't they treating that? Haven't they known for 100 years that people gett this response after an illness just like they get guillon burette? Can't spell it. But like how can they just ignore such a thing as a swollen brain?

[@emmabrooker166]

Appalling that no medic took responsibility and sorted out a way of nutritional delivery for her. She was just left 🤦‍♀️

[@nicci24]

Too many medics hate women. They need to remove the hazing, bullying and sleep deprivation which is endemic in medical training. They're still teaching that women can't feel pain and their specific organs (like the cervix) don't have nerve endings. It's all misogyny.

[@georginawhitby1320]

And worse still , the system is normalising that neglect .

[@lilliankeane5731]

That is awful! Her poor mum had to watch her suffer the illness as well as battling the disbelief of her condition.

[@fleurosea]

Yes, what did the nurses think that she was just ‘lazy-ing’ her self to death 🤦‍♀️

[@lilliankeane5731]

@@fleurosea yes☺️ true… you made me smile, it is a vicious circle , no one hears us , but now that ‘long covid’ is here, suddenly we are visible and heard. (Validated somewhat )I wonder why that group of people were believed but the m.e. and c.f. people were not? It’s very a lonely place.

[@jj-gk6rj]

​@@lilliankeane5731long covid is exposing just how many failures there are around post viral illness, medicine and government protocols. It is just the tip of the iceberg, lots the people in charge don't want being revealed so they are slowly paying attention to long covid as minor damage control. Also with people becoming disabled en masse thanks to long covid, people are out of work like never before and that's bad for the economy, so that's another reason some attention has been paid. It's sick really....🙄

[@crystalfoley9997]

This September will mark my 50th year of struggle with ME. ME is not a new illness, the medical community was aware of it as far back as the late 1880’s, and the fact that neither the medical communities nor governments of the U.S. and UK and every other country that continues to ignore this health issue and blame sufferers for their illness in spite of the massive amount of exposure it has had throughout the past 40 years is not only enraging, it is unconscionable beyond measure and horrifyingly cruel. And every time someone dies from this disease and that fact is acknowledged, they claim that they’re “going to do better”. They never do. Never. They continue to leave us to rot. I am so very sorry to Maeve and her parents and friends. So very sorry.

[@gardenstate732]

How does this have anything to do with the US we pay for care and get it.

[@DavidAllison-qs8wn]

​@@gardenstate732 No, actually there are very few examples of good medical care for M.E., either in the U.S. or anywhere else that I'm aware of. The problem has been a lack of medical research into the disease, about which you seem to not be aware.

[@tammiep9628]

@@gardenstate732 that’s not true. I live in the US. We may pay for care, but we don’t always get it.

[@TillyMint1983]

As someone with ME, this case hits close to home. RIP Maeve, you are no longer missing - you are now free to fly high For more info on ME: #millionsmissing #meaction #decodeme

[@spudspuddy]

victim award in the post

[@cryptidsprinkles]

❤❤❤❤❤

[@SolarVibeEnergy]

Same, I hope for urgent improvement of awareness & training this ignorance is still going on right now with those dealing with this side effect of gastroparisis which can be helped by some experts.

[@Padraigp]

If your encephalitic do they not treat the jnflamation in your brain. What is it meninges encephalitis something like that. Why aren't they trying to bring the swelling in your brain Down as they would with acute encephalitis? I dont get it.

[@Padraigp]

​@@spudspuddyare you mocking somone for having a disease? Is that how you feel good about yourself? Cos you're sort of jealous in some way and begrudge anyone getting attention for a disease so you feel the need to air your bitterness for some attention? God love you. What a sad and sorry state to be in. No doubt there will be some sort of award for you too some day. Not today.

[@plankton50]

I don't understand the medical professions attitude to M.E. It seems like there is a severe issue with the culture where there's almost a hostility to people presenting these symptoms.

[@SatumainenOlento]

Yes! The hostility is so stra ge! And it IS there!

[@M_SC]

Have you met hypochondriacs? And people with mental issues making them lie and exaggerate? They’re real and common and make able bodied people hostile to chronic illnesses, allergies, etc

[@plankton50]

@@M_SC This isn't the space in this comment to express all my opinions on this matter so I'll keep it relatively breif. The that people with mental health issues exist does not justify hostility in healthcare. The fact that the physical feeling symptom of fatigue can be caused by both physical illness and mental illness does not justify hostility in health care. The fact that some people may lie that they are experiencing a symptom when in fact they are not does not justify hosility in healthcare. It may be an explanation. It may offer insight into how to improve the situation, but it is categorically not an excuse. It is basic professional conduct to treat people without hostility. If you are in healthcare and you are unable to complete that basic expectation because of the behaviour of hypocondriacts, mental health sufferers and liars, it is up to you as a professional group to do the work required to make sure that isn't the case going forward. There are many health professionals who also manage to deal with the same difficulies but manage not to be hostile towards people. If you are a healthcare professional I would suggest you find those colleagues and learn from them how to improve your conduct. Quite frankly. Anyone who deals with members of the public understands how awful people's behaviour can be. To use that as a justification for hostility is, in my opinion, not good enough.

[@soggymoggytravels]

My experience is that unless you have abnormal blood test results then mainstream doctors dismiss you as "well". Only when you start to insist that you're not, then their next move is to pull out the antidepressant prescription. I agree it's abysmal.

[@plankton50]

@@soggymoggytravels Yes it's really not good enough in my opinion. Personally I wish doctors were better at saying "we can't find a physical explanation for your symptom at the current time" rather than framing it that if the tests come back fine, then the body must be fine.

[@WhichDoctor1]

how is intravenous feeding more dangerous than starving to death?! Once someone is at risk of death from malnutrition and all other options have failed, how is it less dangerous to let them die than to try a last option to save them?

[@johns1600]

Iv feeding as you put it is a very challenging procedure and needs very regular observation of electrolytes, it is dangerous. It is only a short term method of nutrition, not suitable for all.

[@swan96]

@@johns1600 Please read Whitney Dafoe's letter to the Coroner. He has very severe M.E., has been fed by TPN for many years with no complications - he is in the US. Standards need to change here in the UK.

[@M_SC]

@@swan96who is paying for his treatment? Things are deemed too dangerous when the level of treatment is such that it can’t be provided, like, if the supervision of that kind of feeding requires 24/7 monitoring by a nurse who can’t do anything else at the same time it can’t be maintained for long, that nurse has to be treating 10 patients (or whatever the number is) otherwise the other 9 patients have ti be treated by the other nurses that now all have 14 each instead of 10. And all 14 will not get enough care. I’m not saying this is right, I’m just answering the question, which is a good question

[@swan96]

@@M_SC Its not the cost which is being questioned, it is why it wasn't offered as treatment despite evidence given to the Endocrinologist at the Royal Devon and Exeter Hospital and also to the Chief Executive, which to summarise stated that TPN "may well save Maeves life". The letters were from a very experienced (25 years) Physician practising in London - Dr. Michael Weir. You can read both letters which were submitted on the M.E. Association website. Very, very sad his advice wasnt followed.

[@butanywhere]

​@M_SC TPN doesn't require so much help or money! People put TPN on themselves everyday. Of course there's some danger of infection, like with any such intervention, but TPN bags actually are so well developed that at this point you just put it on and done.

[@riverdeep399]

I've had M.E. for 21 years and nothing has changed in those years.

[@larapalma3744]

44 , outrageous really

[@emilysnyder4857]

20 years, and they called it Chronic Fatigue Syndrome and Fibromyalgia in 2004.

[@GLITTERandSKULLZ]

Over 30 and told 8k just lazy and its in my head.

[@cheyennes7681]

​@@emilysnyder4857I have been diagnosed with fibromyalgia. I thought they were separate conditions but very similar?

[@FaithWalker-tm6yo]

I am so sorry. It is hard to imagine how we don’t have treatment or at least proper protocols for care.

[@fay-amieaspen6046]

Fibromyalgia and ME Chronic Fatigue & Chronic Pain are very real very serious and We don't make Our symptoms up. We need to be listened to & respected. Wear Purple for Fibromyalgia & ME.💜💚

[@kathycuster1714]

I have fibro. I would not wish it on anyone! I am so tired all the time. I also have nasty arthritis chronic pain takes it out of you. It is exhasting..Good days when you try to get up and try to do stuff, the next 2 days you'll be in bed trying to recover. Barometric changes are killers!

[@ethxo6734]

Step one would be defining what ME is. The video outlines that it’s misunderstood but doesn’t start off with explaining what the acryonm stands for , how it develops, the symptoms etc. I can infere but if the goal is to spread awareness I think that’s a good place to start.

[@love2000amglam]

Exactly. I just started watching and am so lost.

[@loscheiner]

About 1 minute in they write on-screen that it stands for Myalgic encephalomyelitis. Of course that doesnt help anyone who can’t see the screen, and it still doesn’t define the disease or its symptoms.

[@Ruthavecflute]

Its a good point. One of the problems with ME is that it's a diagnosis of exclusion i.e. If you turn up with the sympoms the doctors will do a bunch of tests to try to find a cause and if they can't find one it gets labled ME. Not knowing what causes it makes it hard to develop treatments and causes many people in the medical profesion to take it less seriously than they should.

[@hannahahlepoetry]

Ive had chronic fatigue since beginning of 2022 and I’m sick of talking with brick walls in every direction and abandoned trying to get help from the NHS altogether- they’re supposed to be educated people but they never fail to be stupid and patronising in every interaction

[@victoria.xseven7913]

They make it worse by using terms such as "health anxiety" or diagnosing depression and anxiety and IBS on a whim because that's the easiest thing to diagnose, then go back on their promises or make the patient do things that make it worse, then blame the patient for being uncooperative.

[@swan96]

I've had some very stern discussions with patronising GP's. Luckily I eventually found a good Consultant and my current GP is wonderful but they are sadly few and far between. I dont understand why the lack of understanding continues. There are medical primers available and have been for many years so why some GP's and Hospital 'Dr's' are ignoring these is not acceptable.

[@jasminebarratt1809]

Yes I've esperienced the same, it seem just to be, here's some drugs, now F off.

[@CricketGirrl]

Do you mean you have chronic fatigue (a symptom of many illnesses) or chronic fatigue syndrome (a disease in its own right)?

[@Solscapes.]

There is a worldwide problem with the sickest people being those in positions of authority.

[@CeeDeeTeeVee]

Need to explain in title what ME is….i had to read through comments to find “chronic severe fatigue”

[@dweebicusmaximus]

Really? You couldn't have listened for one minute and forty six seconds, the point at which the piece names the illness? Was that really too much of your time to devote to a video you clicked on, presumably on purpose? It's only nine minutes long!

[@marie34K]

2:18 ​​@@dweebicusmaximusI didn't understand ME in the title either so I immediately Googled it and recognised that it was just the medical term for something I had heard of . But English is not my first language . So don't be nasty to people who would like titles more understandable since they might just read / listen to improve their English or keep it fluent . And to the people who write these somewhat cryptic titles I'm sure you lose viewers only because simpler words would attract more people whose English doesn't extend to acronyms .

[@junbh2]

​@@dweebicusmaximusIt's always best practice to put such information in the title or description.

[@roringusanda2837]

What does M E stand for? I've never heard chronic fatigue syndrome called ME, and idk if they are the same?? Also I don't believe that CFS is taken very seriously in the USA either.

[@mensesmimi]

​@@roringusanda2837myalgic encephalomyelitis

[@clarice3978]

This poor girl. How terrified she must have been and what in the world is wrong with these doctors. Stabilise the patient and then focus on the how and why. Stop dismissing patients (especially young women!). I've had ME/CFS for over 15 years and it's the worst. Worse than any of my other ailments. Pain can be managed... there are options for pain. Yet we seem to know nothing about energy production and what is going on within the bodies of people with ME. Most people with ME aren't able to advocate for ourselves so we rely on others to do so for us. To those people --- THANK YOU ❤

[@fleurosea]

Maybe greater awareness of ME will be a good that comes out of the covid pandemic

[@jupo9928]

The whole NHS is like this, you either need to be well enough to fight when you need something yourself or have someone who cares for you to do it on your behalf. GPs need to be reminded they're not specialists and shouldn't prevent care but instead provide access to specialists who can help, and in the meantime there's a lot of good GPs can then do. We all pay into the NHS through our tax and we know it's stretched but you need to insist to get the care you need. Me, a person with leukaemia who took too long to get diagnosed, as they thought maybe it was a vitamin d deficiency.

[@jj-gk6rj]

​@@jupo9928agree with all you have said and also (not sure if you are aware of this) people with an M.E diagnosis are prone to developing a certain time of leukemia. Which makes all this worse! I hope you are doing well now❤️‍🩹

[@harleybrewer99]

I had chronic fatigue as a teenager and luckily my doctor understood and I was believed from the beginning. The same wasn't true at school however, with both teachers and other students convinced I was faking it. I remember being told off for falling asleep in class on a few occasions. People don't realise how serious it is and after around 18 months I was considering taking my own life because I couldn't see myself getting better and the doctors were getting less hopeful. Thankfully I mostly recovered within a couple of years., but my heart goes out to everyone still suffering from this illness. There needs to be a lot more open discussion about 'hidden' illnesses like ME. I feel that because doctors don't understand ME well enough to provide a cure or in many cases alleviation of symptoms they try to downplay its existence. I hope that cases like this open the way towards change.

[@ReviewBoard-uy5nv]

We need more research on ME. We need more training for nurses and doctors about ME.

[@HollyJordan15]

There is research but it doesn’t transfer to real life unfortunately.

[@coolbreeze5683]

I have a friend whose sister had breast cancer and after her treatment, she developed ME afterwards. She believes the chemo altered her immune system so much that it gave her ME. She says it's worse than the cancer because atleast cancer will eventually end your life. It's sad because she regrets taking the cancer treatment since it resulted in her living for 4 years so far in misery. ME has no treatment and no prognosis. We all fight to live but it's all about quality of life, not so much about length of life.

[@kerrynewnham8946]

I have been lying down, unable to sit and yet PEG fed with ME in the U.K. for twenty years. No aspiration, or serious complications. In my view the Hospital put too much emphasis on following rigid protocols that weren’t designed for unique ME complications, didn’t listen to the expert private doctor who had experience and was trying advise & wanted to try various forms and ways of artificial feeding & had an ME NHS doctor without proper severe ME experience as the main hands on guide , leading drs who were uneducated on ME & ambivalent about whether it was even a physical illness. Of course, ultimately there was no proper ME friendly nursing environment at the hospital which meant even being in hospital was detrimental to the lady battling severe ME , and no wards exist for acute ME care needs anywhere in the country or ever have done. This angle of care has simply been no one’s priority. ME/CFS biomedical research funding has not exceeded £4/patient/year In over twenty years. In context, dementia gets £160 / patient/ year and it’s been set to that by the government and the Medical research council in order to meet the target of finding treatments for dementia by 2025. ME has never had any treatment targets and the Medical research council have repeatedly “declined” to offer ring-fenced funding to drive ME - as a neglected and stigmatised disease - progress. Dementia is only 4 times more common than ME. ME is not rare or mild.

[@Betweoxwitegan]

Dementia is 6.5-3.25x more common than ME, it has a higher prevalence in aged populations and thus is projected to increase at a faster rate than ME and is more serious from a demographic perspective, obviously ME shouldn't be ignored and clear targets in treatment should be ascertained.

[@Padraigp]

I'm sorry I thought it was establish 100 years ago that people get me which is a swelling of some part of the brain after an illness..not unlike guillon barret syndrome which I cant spell. Like wtf is wrong with people that they would ignore a phsyical disturbance of such magnitude. I mean even if it was not me to be exhausted tired unable to lift your body up could be a thousand different things thst need testing for. Why would they not be testing for all those things that moght cause those symptoms it makes no sense at all to me.

[@jj-gk6rj]

​@@Padraigpgenerally, doctors test for thyroid issues and vitamin deficiencies. They may grant you a ct scan but you have to push and fight (and usually pay private) for any other tests. M.E is always overlooked, you just get treated like a crazy person who isn't trying hard enough, it's sickening.

[@chrysalis4126]

My son had this for several years after getting glandular fever. Luckily he wasn't so bad that it affected his eating and now he is recovered and healthy. He had to reduce his working hours and eventually left and went to Uni which meant he could do most of it from home and rest when needed. His workplace were reluctant to accept his illness.

[@brendalg4]

What is glandular fever? I am wondering because I got some type of illness... The doctor just stopped treating me even though I wasn't getting better. Then later on I developed fibromyalgia. I think I actually have ME

[@jj-gk6rj]

Mononeucleosis is glandular fever ​@@brendalg4

[@damiettes7140]

Why as a news organization, don’t you tell us what ME stands for. If it’s rare it’s important to spread the word.

[@CricketGirrl]

It's not actually that rare. It's more common than diseases like multiple sclerosis.

[@purplevelvet69]

Myalgic encephalomyelitis (ME/CFS) has a wide range of symptoms. The most common symptom is extreme tiredness

[@ethxo6734]

My exact thoughts.

[@faithlesshound5621]

Myalgic = muscle pain. Encephalomyelitis = inflammation of the brain and spinal cord: however there is no evidence for this, which is why it is normally abbreviated to M.E.

[@ethxo6734]

@@faithlesshound5621 Yep, I googled it to figure it out. My point is , if their goal is to spread awareness start with defining what it is they are trying to spread awareness of.

[@orion3253]

I can only imagine the pain and grief Sarah and Sean have endured for these last three years and the anger they must feel at medical professionals who gave up on their daughter. Spread the word, listen to the patients, support them and support their families.

[@cheryl5994]

MY CONDOLENCES TO MAEVE'S MOM. MAY HER PASSING HELP THOSE WHO ARE GENUINELY SUFFERING GET THE HELP THAT THEY NEED. 🌸🌸🙏🏻🌸🌸

[@octrosie20]

Keep this coverage up. Please don't forget 'us'. Hold feet to the fire.

[@the14thmoonofuranus]

@@octrosie20 that's my fear. M.E hits the news, makes a good story, then we are pushed aside for the more interesting stuff. I've been bedridden for years, nothing ever changes, I've given up on it being anything else.

[@serenityb5816]

My friend deleted himself. He had ME. He could tell the best and funniest stories, but they absolutely exhausted him. The world lost a beautiful person. He was married and had 2 young children. He didn’t want to burden them, and wanted them to be happy. It was so awful for them. His wife is remarried now and his daughters are teenagers and doing well.

[@fay-amieaspen6046]

Chronic Fatigue & Chronic Pain is no joke. This woman shouldn't have died.

[@eleonorabartoli2225]

I wish you had defined ME at the very beginning for those of us who never heard of it. Informing people is the very first step if you want something to be done about it...

[@alexwaterville8074]

This is something that scares and frustrates me as someone who is housebound and often bedbound with the condition xx

[@vinoddamji5729]

ME or Chronic Fatigue Syndrome is still very complex condition and doctors have zero experience understanding it. Chances of misdiagnosis are high Diagnosis can take a very long time to be determined. Very little help is available from NHS to DWP. I hope things change in near future. I am someone who has been suffering from this condition.

[@pammasters9994]

Thank you Karen for speaking up for all of us with M.E 💜

[@user-gz5mx2nd5p]

I am so sorry for Maeve’s untimely and preventable passing away. I had milder symptoms comparatively but I don’t think anyone cared around me. It was, according to others, in my head and I was lazy. Thanks for speaking up and sharing your story which will help hundreds

[@maegansmith2687]

Thank you Channel 4 for this coverage. RIP Maeve x

[@PatriciaQuinn-t4h]

I have been suffering from ME for some time now, this brings it home to me. Maeve is a beautiful Angel, no more TEARS or pain. GOD BLESS her and her wonderful family 🙏RIP

[@indigoblue4791]

Heart broken for this young woman's family. It's an sickening situation, how dare this Trust not take responsibility. I've had M.E/CFS for over a decade and ill enough to still be house bound, bed bound for variable periods daily. No help or real help or support exists. Medical professionals even stopped calling it M.E and it was changed to Chronic Fatigue Syndrome!! Our lives are fundamentally changed as we try and function. It's not a life that anyone without this condition would even recognise. I hope this avoidable death will be the catalyst to real change in all the ways necessary to support this growing community of sufferers.

[@soggymoggytravels]

Thank you for helping to bring attention to ME. Such a sad story.

[@AndreaHallissey-qe4lb]

My husband has suffered with CF for a number of years and had to stop working at 58. Test after test showed nothing so he was told to learn to live with it. So many suffer like this.

[@tyrannosaurus696]

I had to stop working at 40. I tried desperately for 2 years to hold onto my job as a teacher, but my employer was completely unwilling to make any meaningful adjustments & refused to understand my condition. Teaching was my vocation & my passion. I've lost that, my wife, & spend 99% of my life in bed. Luckily I still have my amazing daughter to live for, even thoigh I don't see her as often as I would like. You are an incredible person for sticking with your husband, caring for him & advocating for him.

[@emilysnyder4857]

Thank you for highlighting this condition. We can't march and hold protests to raise awareness because most who suffer from this are bed bound.

[@lkececi7513]

Thankyou for this, many people are too embarressed to tell folks they have this illness

[@jj-gk6rj]

Literally me! Even after 20 years, I do not need complete strangers with no understanding of the illness assuming I am crazy or damaged goods or a faker because ultimately that is what they do. It's disgusting, dehumanising and just adds further insult to injury. People can be really cruel.

[@toniakara592]

My daughter has FND (functional Neurological Disorder) and she had apalling treatment at Bath RUH Hospital? They said that she had Factitious disorder. She is so much happier being cared for at home!

[@eleanoralba5792]

I’m afraid Bath and Bristol are in the heart of the psycho babble approach to illness and especially ME. I wish you both well.

[@kirrusAgain]

It might be worth getting a second opinion for her. A lot of ME patients were misdiagnosed with FND

[@sherri5134]

As someone that also has severe M.E and having faced years of gaslighting, false promises and insufficient care, poor resources. There is nothing available. It took 4 PIP apeals to eventually get a long term award money I needed to pay for a carer that comes to help me , to keep clean, eat, keep onto household etc. The only help I ever got was pacing energy management or they offer you psychological ie to deal with the emotional aspect of no cure etc

[@feelgoodwithfibro]

Terrible 😢 I have ME since 2007 and it’s the toughest things I’ve ever faced. In recent years I’m a bit better and have a podcast and trying to finish a book on my experience. If you have ME or care for someone with this condition please get in touch I’d like to have you on my channel and spread the word.

[@velocitygirl8551]

Oh my heart is with this beautiful mother… what a GOOD mother. Many of us have Moms who didn’t believe us.

[@frusia123]

I wouldn't have gotten my Hashimoto's thyroiditis diagnosis if I relied on GPs, let alone a rare condition. Heartfelt condolences to the family.

[@BonnieGranvelli]

Yes I have had elevated tsh 3 yrs on meds other day had dr draw TpA it was 271 normal is below 34. I' have been exhausted for a long time I have bradycardia 45 to 130, pulse I'm sure I have hashmitos possibly vasculitis due to leg an foot pain, where do I go

[@frusia123]

@@BonnieGranvelli Bradycardia is one of the symptoms of under active thyroid, although if your pulse jumps between 45 and 130, then it might be some kind of arrhythmia? I would definitely get that checked as it might or might not be related to your thyroid condition. Also if you're taking meds but still have symptoms like extreme tiredness, then that needs to be reviewed. If your GP is not listening to you, perhaps you could buy a test from Medichecks, they include a doctor's advice with the results. Then you could go back to your GP and tell him what Medichecks recommended.

[@cmtippens9209]

No one should starve to death, let alone someone who has access to resources. If one delivery method of nutrition doesn't work, you keep trying different methods or looking for alternative methods, even if it means that you have to rig more than one method together. You don't just decide someone is making it up or is mental because you can't work out how to take care of them.

[@SuzanneU]

I have long covid. When I have a flare, I'm often too tired to finish a meal - the fork or spoon is too heavy. Some days I literally cannot get out of bed - even turning my head on the pillow takes everything I have. It's 10 steps from my bed to the toilet; some days I have to crawl.

[@mariatodd3132]

Long COVID is awful and can mirror the symptoms of ME and other chronic viral borne disorders. Lets band together to try to find solutions. One of the only positives of the epidemic is that the medical field is finally recognizing things like ME as a problem. So hopefully we can all get the help we need much faster. Wishing you the best on your recovery.

[@beautifully_wonderfullymade]

​@@mariatodd3132 I have Long-covid also. My hope that is in research for Long-covid will benefit those who have been suffering with ME. What they have endured has been cruel. Unfortunately I live in Australia and it still has outdated research that Long-covid and ME is cured with CBT and graded exercise. My GP recommended exercise in the beginning as that was the health guidelines. I became very ill. Lost the ability to talk, walk, could barely eat as I could hold myself up. I was so deeply fatigue and lost all sense of time or awareness. I would drag myself to the toilet. Australia is shameful in it's ongoing treatment of LC and ME sufferers. It has put hardly any funding into research and their public health system in most parts of Australia provides little to no support. Finding safe support in Australia is incredible difficult. It is such an isolating illness. Medical professionals, 'friends' and even family members shun you. Hospitals are NOT safe for sufferers. Most Drs are arrogant people, who because they don't know how to treat you, blame you for your illness. Noone would choose this horror illness. It's a prison sentence for a crime that you don't even know what you did wrong. To make matters worse you have zero idea of when you will be released from your prison. I have recovered enough to do minor low energy tasks. Still can't do much, but I can walk, talk, eat and shower most days. I am still housebound after 20 months suffering. I learnt from the ME community to pace. To tell the physios and Drs who recommended I exercise to get better that that they knew nothing. I ended up going with a private provider who prescribed me Low-dose Naltrexone, low dose Nicotine treatment, antihistamines and Ivabradine to help slow my heart rate (POTS). I also changed to a low inflammatory diet, high in probiotics (don't have major issues with MCAS) and no caffeine or alcohol. These things combined with pacing, repairing my digestive system have given me back some life. Severe ME is cruel, made worse by a medical system that chooses to be blind and arrogant.

[@LilyGazou]

Frontline doctors website for info on this.

[@buddybleeyes]

I hope they start supporting people with M.E. better. I hope this does eventually bring more of a spotlight on it. If anyone who does not understand what M.E. is, watch the film unrest. It will give an insight on it, and how hard this can be. It has been well over 10 years since my mum had her diagnosis of M.E. I was an unpaid carer at the age of 11 for my mum. She was bed bound for a year at a time. The attitudes of most doctors is that "it can't be that m.e."

[@tyrannosaurus696]

As a dad with M.E., I just want to say you're an incredible person for taking care of your mum. Unfortunately, it seems to only be people who have had family members with the disease who understand how debilitating it can be.

[@alexwaterville8074]

Which is great unless you have no family and so hence no advocate x

[@jj-gk6rj]

Unrest is a bad movie and definitely does not help with the stigma around M.E

[@buddybleeyes]

@tyrannosaurus696 thank you, that really means alot to me. I agree there, I've nearly had fights with mums ex friends who just called her lazy. The stigma has to go, it's real

[@SuperKarobi]

Truly sorry for your loss.😢

[@ladyhawk5245]

Poorly trained incompetent doctors are murdering people all over this planet. My heart goes out to her mum. We all need to take an active hand in being responsible for our own care.

[@abigail1st]

In my experience, it’s not lack of concern or willingness from doctors to improve their knowledge, it’s the fact that the NHS limits the route to suitable support via its own structure, its measurements of health data and its prescribing policies. Instead of leading the way in ME/CFS/long covid/postviral fatigue etc, the NHS has swept our needs aside because we don’t ‘fit’.

[@brobinson8614]

@@abigail1stI’ve had two so called health professionals tell me to my face that ME/CFS is “psychosomatic” and I’ve also been told by friends of a neurologist I saw that privately he told them thought ME/CFS was a mental illness. It’s since been proven beyond doubt it is a physical disease. Sadly these people still work in the healthcare system. They need educated ASAP. But ME/CFS is still not taught to medical staff

[@mensesmimi]

I have encountered that doctors are arrogant and dismissive of anything that goes beyond the limitations of their experience or knowledge without wanting to do tests or research for anything that presents as challenging for them. They suggest things you already tried that did not work (do not listen or believe patients), suggest diagnoses that were already ruled out that don't even fit the symptoms, refuse to test for diseases that do fit the symptoms if patient has done own research and documentation of the symptoms because they don't want to validate a "self diagnosis" by confirming or denying but this arrogance and pettiness costs lives and much suffering if patient was right, and if all else fails accuse patient of faking it.

[@abigail1st]

@@mensesmimi I’m so sorry for your experience. There are of course arrogant doctors out there, I must just be lucky with my local practice.

[@SolHarper]

We are left to rot.

[@Kittyinshadows]

Just got my CFS diagnosis a few weeks ago after several years of illness. The specialist said "this is not in your head" and i thought I might cry. The medicine I started has me able to start cooking again. It makes me very hopeful

[@breelong2544]

I was bed bound for years with occasional times of feeling ok which were brief. I've managed to get myself out of that with a high fat gaps diet . Healing my gut and working on my nervous system. Drs just have no idea and there is little point going to one . I'm not totally healed absolutely not but I wouldn't be atleast more functional if it weren't for my own huge amount of research and trying and testing hundreds of things to heal myself. Hopefully full healing one day will be achievable. I absolutely feel so much for anyone in this situation it feels impossible and soul destroying

[@Stevie-oy8zj]

May I ask how or what did you do to heal your nervous system? Thank you

[@breelong2544]

It's not 1 straight forward answer really. The high fat diet was absolutely the most powerful thing I've done . I couldn't have imagined it to be so healing. That essentially got me out of bed . I do do either somatic exercises or feldenkrais sooth and calm everday . If you go into David zemach bersins website there is a little free section I got an app and have the little exercises there . I also follow Irene Lyon who is an expert on dysregulation if the nervous system. It's not 1 thing but a combination and it's taken a huge amount of time and dedication to get myself to where I am now but small small steps . What I do know is the NHS will not heal you . I still work in myself every day and if I didn't I fear going back to being debilated In bed . I wish you all the luck on your journey I'm happy to answer any other questions if I can .

[@CK.Stellata]

I hope New Zealand's healthcare system takes note of these findings - especially regarding the behavioural "treatments" currently in use.

[@rosella1919]

This story is so sad. I believe the failures of the NHS. It took over 2 years for my daughter to be diagnosed with a 43cm, 8 kilogram benign tumour on her liver. It was finally found while being scanned for another problem. She was gaslit by doctors who didn’t believe her and told her to drink aloe vera juice, do yoga and meditation. The impact on her life has been devastating.

[@JeepGirl45]

What a terrible condition. Reading the comments I feel for all of you having to suffer through this.

[@gravyz2cute4u]

How terrifying to be so severely affected in your day to day life, yet having doctors barely able to help you :( I do hope her death will benefit others going forward, but it's so tragic that action was only taken once her life has ended.

[@eiryamorlais4978]

In America - 65 years old/lived with such (plus fibromyalgia/severe chemical sensitivities) since 19 y/o. Overall, during this span - little acknowledgment/ minimal assistance. I eschew conventional medicine more than not. Would rather struggle on my own...with whatever bit of "natural" medicine I can afford. Reprehensible.

[@lieslwindjulie3230]

🌹 Maeve 🌹 Rest in peace

[@Talesinmaking]

It's so crazy! Nobody should have to explain their condition too a medical professional they should be trained enough to know the condition it's not like it's new! The support out there doesn't exist well there's no known cure so we can't help you but it's a medical condition there are still needs to manage the condition that you could aid with. ME patients shouldn't be written off it's a huge problem that needs to change.

[@Bookbunny2024]

There is definitely no support for this I also have ME,since a teenager and I live in the downhill progression of my symptoms.i just get repeatedly declined for any type of support or disability help and it’s just disheartening as a single mom I didn’t ask for this and I just need to be able to get my ten year old through her school years 💔

[@brandysnaps9221]

I have ME and even my kids say I just lay around.

[@lidewijcroes1795]

I’m sorry

[@swan96]

Malnutrition is NOT a complication of M.E. Maeve died due to a lack of care (and general misunderstanding of the disease process) by the NHS who killed this beautiful young woman. Wholly preventable.

[@emmabrooker166]

🎯

[@swan96]

...I must add to this that this must NEVER happen again. M.E. is still a very stigmatised disease - it's time this stopped and appropriate care is given to all who suffer with this debilitating disease.

[@CricketGirrl]

It may not be a symptom, but it is a complication. When you get too sick to be able to feed yourself and digest food, malnutrition is a very easy state to get to unfortunately.

[@swan96]

@@CricketGirrl Read my post again. No mention of the word symptom. Also read the letters sent to the Endocrinologist and the Chief Excecutive of the Hospital Maeve should have had the correct care from. They were advised by one of the top guys in his field of the prognosis if she didn't get TPN. They ignored it.

[@Kaylee-Renee]

I hope they start to help more. Unfortunately the people worse affected can't push for awareness and research because just getting out of bed to go pee is so exhausting. I put of appointments because going anywhere is so draining. I hate fibro/me it has left me a prisoner inside my own body

[@sqiggle]

There needs to be more awareness

[@elainehorne188]

She was murdered ɓy medical negligence!! Deliberately!!

[@Victoria-dk3nv]

How shocking health professionals should be sacked 😢💔

[@kikijewell2967]

The first time I heard of chronic fatigue syndrome was in the early 1980's. Little had changed. I hope covid is the sea change for everyone.

[@Nikki-yn7yv]

The NHS needs better support and more doctors and Less Managers !

[@Kyla94934]

Oh my god this is terrifying

[@kerryfirehorse]

It’s shameful that this happens.

[@tickledtoffee]

This is tragic. My previous boss's daughter has ME and it's destroyed her life. It's heartbreaking how so many sufferers are treated so horribly. Thankfully she has a supportive family and access to proper care.

[@mariatodd3132]

I had/have ME for about a decade. I am young and consider myself recovering as my health is way way better than it was before. So I am lucky. For those still suffering, I know your pain. If anyone would like to talk to me about my experiences and/or give them any tips on what has helped me, in case it works for them, I would be happy to do so. We should form our own online or otherwise communities to support each other since the medical world is failing us.

[@Mrstigger747]

I have ME and it nearly did kill me! I live in Canada and was able to find a liquid nutrition supplement that I could tolerate and it literally saved my life! Our doctors still don’t believe ME/CFS is an actual illness. 👋🇨🇦😭

[@jj-gk6rj]

Same for me here in the UK! If it weren't for my food processor mushing and liquifying foods and supplements for me, I too would be dead. It's a complete disgrace!!😠

[@melodyreeves5245]

I’m from the US & have lived with Chronic Fatigue…no Dr has mentioned M.E. to my family 😡 So very sorry for your loss 😢God rest her beautiful soul

[@m.h.6499]

I’m in the U.S. We have CFS/ ME in our family. I know it’s real. We know about having to parcel out energy and how it can take days to recover from exertion. I thought the U.K. was a pioneer in the diagnosis and treatment of ME. I’m apparently wrong. For all the warriors out there, in our house you are believed, you are valued. We continue to fight for funding, research, diagnosis, and treatment. You have support from here. Maeve will not be forgotten. She will be remembered here in 🇺🇸. Parents, I’m so sorry. I can tell how hard you fought for her. We will continue fighting. God Bless. ❤

[@IsisFlavia]

The ending really resonated with me so, so much. I am so sick of having to fight and educate so called health care workers who are to stupid to realise how little they understand. Just once (ideally, mu than that of course) it would be so great to meet someone who understood, who had something to offer which made a difference, for me to be able to make some progress. We're forced to be the ones to inform others of our symptoms, yet no-one wants to listen to us. Hmm.... the irony

[@MarianaCross-ob2ft]

How could nutrition through her veins be "more risky" than dying of malnutrition?

[@fredamariebrown4727]

I have never heard of ME prior to this KZbin. Thank you for sharing this information.

[@AwkwardSquirrel13]

Rest sweetly dear soul, i will hold you in my heart. Thank you to Maeve's Mum and Dad for fighting and advocatinng and sharing this with the world. This is profoundly unfair and unacceptable. More must be done, worldwide.

[@DarkestAlice]

Please accept my sincere condolences, Sarah. I am shocked and so sorry for your loss. I hope, Maeve will rest in peace. 🕯💔🕯

[@daffodil1017]

M.E. patients all around the world were following Maeve's story and hoping the hospital would listen and provide the basic care she needed. Once again, a young patient has died due to medical neglect. All the advocacy was not enough to make the hospital listen. Rest in peace Maeve 🙏💙 There truly is no help- no treatment, no understanding, no cure.

[@Robot256k]

In the UK you better hipe you never get truly sick or suffer mental health problems because you're pretty much left to get on with it. If there isnt a pill that will fix you that ain't interested. The whole system is a joke. People are literally dying in the corridors because they can't get the appropriate treatment in time.

[@CricketGirrl]

It's worse in the US.

[@jj-gk6rj]

​@@CricketGirrlsorry but seriously doubt that. The UK is barely a developed nation anymore, it's a cesspool that keeps on failing

[@arrowarrow17]

I am so sorry.

[@Lawnew8828]

Its amazing how many nhs staff use mental health as an excuse not to investigate issues properly. In part its underfunding, in part its lack of training and in part its incompetence. Not everyone can be cured. But the worst thing about conditions that are unidentfied or dimissed as mental health issues the paitent suffers.

[@clarice3978]

So frustrating isn't it! I hear about it happening ALL the time. What really annoys me is that many mental health symptoms can be a direct result of a physical problem, like thyroid imbalance, PMS, pituitary issue, menopause, brain injury, hormone problems or other serious conditions which will not fix themselves. They act like the first line of treatment should be therapy when actually they should be ruling things out.

[@bluedeva]

Unfortunately this is way too familiar, luckily I did get a diagnosis but it took years and was eventually confirmed when I was taken into hospital from severe exhaustion and sepsis. I had to move to another GP practice and was met by a Dr who “didn’t believe in yuppie flu or M.E it’s just for lazy people”. Even though it was confirmed by not only my previous GP and two consultants in my medical history records, she refused to help manage my M.E flare or refill my repeat prescriptions. I switched GP Practice to a GP that fully understood M.E and supports the management and trying to prevent my flares which I’m truely so grateful for but ever since Covid actually getting to see my GP isn’t easy just as mentioned. We desperately need to save our amazing nhs and stop the pharmacist first scheme as it is putting people with chronic illnesses lives at risk. #saveournhs

[@riverdeep399]

Yep. No one gives a shyte about us.

[@AE-yt4lx]

Did they even mention once what ME is? I see it written on the screen, but still don’t know what it is.

[@lorenam8028]

And yet one more woman ignored and gaslit by the medical community...

[@samanthamountford415]

I have to ask to see a GP who believes ME is a real condition… that is sooooo wrong

[@lj2070]

There's actually quite similar echoes in fibromyalgia, one doctor said to me I couldn't swallow at the time and had lost almost 15 kilos, I had a beautiful doctor that stepped in and sent me to a really good specialist and, but unfortunately especially the wake of covid so many people have me and fibromyalgia and doctors literally have no idea what they're doing

[@sharongibson1161]

My deepest sympathy 😢😢😢😢

[@lisabutton8618]

This is tragic! So many people get shunned by the medical experts! Given incorrect diagnosis or no diagnosis! Like b12 deficiencies get diagnosed as CFS/ME, infertility, autism. It’s vital for life. No one should be dying from malnutrition in this day and age!

[@reachandler3655]

I do believe that medical professionals are, slowly, getting better regarding ME. 30 yrs ago I was constantly dismissed as attention seeking. It took 9 yrs to find a doctor who referred me to a hospital specialist. Unfortunately, that same doctor insisted it's not a real condition, stating "I work full time, raise a family, and I'm on call. If I can do it, so can you." Nowadays, there seems to be about 30% of medical professionals who don't believe, 20% who don't care, 40% who don't understand but are willing to listen and believe, and 10% that are knowledgeable.

[@thisismetoday]

You are doing a piece on ME, and how it’s misunderstood, without once explaining what it is… Do you see the irony in that?

[@jamiegallier2106]

This.

[@veessbb23]

Thank you....2 minutes in and they have yet to EXPLAIN what the ME initials stand for.

[@Bethoflife]

My condolences for her mom. There was medical failure in my son's death but I was too unwell to pursue it then. I also did not want to put his sisters through that loss again. It's true that time heals.

[@ADebsLife]

Why not identify what ME is at the beginning rather than referring to it by acronym?

[@welshlizardgirl]

This is so so horrible and unnecessary

[@ninaappelt9001]

Gotta love the NHS.