Woman with Severe ME and EDS starving to death in NHS hospital

UPDATE: We want to provide a brief update on Sami Berry’s case and what she needs help with now. The situation in hospital reached the point that Sami decided she had to self-discharge to try and stay alive. She is at home with a Percutaneous Endoscopic Jejunostomy (PEJ ) tube but she needs treatment with antiemetics to help keep any feed down. She is not doing well at all. If you have a suggestion for a private GP or a private specialist in the UK that does not require a GP recommendation, Sami is requesting that you please email her at . The goal is to get Sami stabilized where she can tolerate feed from the PEJ tube if at all possible. Once she is more stable, then she can see what next steps are needed. Right now, her life is in danger.

It shouldn’t be possible to die of starvation in an NHS hospital, but that is exactly what will happen without immediate intervention for a woman in the UK who is at this moment fighting for her life in an NHS Hospital. Multiple failures by the medical system have brought her to this point. 

Sami Berry is no stranger to illness or hospitals. Her initial experience came as an employee of the NHS  and then as a patient living with multiple debilitating illnesses including epilepsy, Ehlers-Danlos Syndrome (EDS), and severe myalgic encephalomyelitis (ME).

Sami went into hospital last November because she could not keep any food down due to a worsening of her EDS and ME. She is vomiting repeatedly. Her body is not allowing feeds through the tube placed in her abdomen. Her blood sugar levels are dangerously low. She has lost a tremendous amount of weight. It has been almost 40 days since she had any true nutrition.

Sami is very concerned she is going into intestinal failure and is at immediate risk of joining those with severe ME and complex chronic illness who have died under the negligence of the NHS. Maeve Boothby O’NeillMerryn Crofts, and Sophia Mirza are three recent examples. 

Sami desperately needs immediate intervention from a specialist who understands her complex chronic conditions. She cannot continue as she is and she is not getting the help she needs now. She has always been an amazing advocate for herself and others. We cannot allow her to die when it is preventable with the right help. Sami is so full of life and is an amazing mom to three children. She is one of the most positive and kind people you will meet. 

As of Wednesday the 8th of February following a Care Team meeting, Sami has no confidence that she will receive even the minimum of care she needs to stay alive, much less have a quality of life. While Sami has finally been given a tertiary to an expert, it is not scheduled until March 8th and will be done through private pay. Her past experience with her hospital care and what she has been told by her present consultant have made her extremely concerned that the specialist’s advice will not necessarily be taken on board and immediately implemented. She is running out of time. 

The complex chronic illness communities have mourned too many losses. We will not stand for one more. The NHS should and can do better. 

*MEAction has been in contact with Sami and her family to ensure we are up-to-date on her care. Late last week, #MEAction sent out a press release to help apply pressure on the hospital to get her the care she deserves. We have received interest from a few major press outlets and we are hopeful this will help to bring about the attention and care that Sami so deserves. Help us demand Sami get life-saving care by sharing this article on social media and with UK press.

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11 thoughts on “Woman with Severe ME and EDS starving to death in NHS hospital”

  1. Thank you so much for telling this important story. ME may be neuroimmunological in essence, but any of us tracking symptom sequences, progressions, and significantly lowered baselines (trying not to say *permanently* lowered & scare the crap out of myself) know that the gut is a consequential turning point for many, possibly a large majority.

    Do you have contact information of where we can write to communicate our support and demand that she gets safe care? Point and we’ll help.

    1. Hello are you on Facebook. I can direct you to the person social media who posted this. It’s a family member and her daughter in law.

    2. That’s my aunty. She’s been my best friend and my biggest advocate.
      I live over in the states and it can make you feel quite powerless when a loved one is facing such terrible things. I am so grateful to those stepping in and stepping up. She is the strongest person I know and I know if anyone is capable of changing the world, it’s her.
      ❤️

  2. That’s diabolical, infuriating and sad. Again. as has been the case for years, it’s not mismanagement as such – but comes from a basic premise by the medical field that ME isn’t real.
    I have had ME for 30 years so I’ve experienced all the misunderstanding, disbelief and rejection.
    Please don’t let us have another Sophia Mirza.
    Wasn’t Sajid Javid going to help with ME because he has a relative with the illness? Is it worth a try to send this to him?
    June Daviss

  3. Here’s a message that’s starting going viral…..
    People with ME/CFS and Long Covid worldwide need to start laying complaints against our medical practitioners who aren’t doing their job.

    We as individuals need to lay complaints on mass. This will wake up the medical community that we will not put up with their dismissive arrogance, ignorance and incompetence anymore.

    The more people that complain, the more doctors will start warn each other to be careful and educate themselves about Long Covid and ME/CFS instead of continually gaslighting us. They will also start putting pressure on their senior medical advisors to start finding medical answers for better treatments. Which will encourage research.

    So if a doctor, nurse or any medical clinician is dismissive, patronising, or even makes a snide remark (which we’ve all heard!) we need to stand up and lay a complaint to their governing medical authority. As for us the patient, the complaint process is very easy to do.

    Yet doctors are afraid of being investigated as it’s a huge audited process for them, and they can get into serious trouble.

    It’s time we as a patient group take the power back!

    Get angry and say “I’m sorry doctor but if you don’t discuss options for my actual physical disease, I’m laying a complaint against you for malpractice!”

    Don’t put up with lack of care anymore!

    Let’s all actually start a revolution by laying complaints on mass! Because if we all do it, they will notice, and in turn that will finally bring change!
    —————

    In Canada you can complain to ‘The College of Physicians and Surgeons’
    https://www.cpso.on.ca/Public/Services/Complaints

    ————

    In the UK contact the ombudsman or phone them to lodge a complaint 0300 061 0614
    http://www.ombudsman.org.uk

    —————

    In the US the ‘Federation of State Medical Boards‘ can help patients lay a complaint.
    https://www.fsmb.org/contact-a-state-medical-board/

    ————-
    In New Zealand lay a complaint to the Health and Disability Commision

    https://www.hdc.org.nz/making-a-complaint/

    Please share and add your country’s health authority’s contact details

  4. Might have craniocervical instability which NHS treat as fictional illness I’m also left to suffer. I got worse from trauma and then pfizer vaccine.

  5. What’s most baffling here is why should it matter whether or not doctors believe a patient is medically Ill before treating her for malnutrition? if a patient is starving to death, you prevent bodily damage and starvation by giving them nutrition by what means necessary. A person starving to death is a clear indication that immediate intervention is needed. No one can “fake” the clear indicators of a body starving. The medical professionals can be as ignorant, lacking in knowledge about ME, or just plain stupid, it doesn’t change the fact that they are allowing people to starve to death. What is the point of medicine if not to use any and all available treatments to save the patient when patient is clearly at risk of dying.

    It’s as if medical professions who volunteer treating refugees from a region caught up in civil war refuse to treat starvation amongst the children because it has ni medical cause; rather it’s a consequences of the destruction of the refugees normal food sources and the ongoing theft of food supplies donated to the refugees. That would be insane wouldn’t it. So is denying a starving woman the medical means of nourishing her body because doctors don’t believe she is really medically Ill. It doesn’t matter why she is starving at this point, what matters is she will experience severe organ damage and eventually death if the hospital does not give her necessary nourishment.

    How many more inquests into the death of patients ME being starved to death under a doctors care do these fools need? How many more inquests before doctors and medical supervisors are sent to prison for murdering these patients? Choosing to allow someone to starve to death when treatment to nourish the patient is available is nothing less than premeditated murder – it is the deliberate choice to let a patient die despite the obvious indicators of malnutrition/starvation because of ignorance and prejudice.

    If doctors and medical administrators want to debate the merits of the diagnosis of ME as a severe medical condition, let them do it after they save the patient.

    And for Gods sake, what does it take for the medical establishment to see the obvious patterns of negative outcomes as a result of their ongoing, sadistic mistreatment of people ME – there os a major pattern here that is hard to ignore. The level of resistance, if not outright hostility, to the medical post-viral condition of ME (and other variations of neural immune disorders) is not rational, it’s not even medically or scientifically sound. I have suspected for some time that nations reluctance/resistance to acknowledge that ME is a legitimate and debilitating medical condition has far more to it than simply a matter of scientific evidence. The exponentially growing mound of evidence showing clear medical abnormalities and patterns of symptoms, even if it is mostly exploratory science (due to the lack of financial support for large scale studies that could relocate and verify promising exploration research), and the failure of psychological research to explain the clear patterns of symptoms and abnormalities found in smaller medical studies, indicates that the decision to reject ME as a medical condition makes little sense scientifically . And letting so many people suffer Medical Systems failures to provide care and compassionate treatment, despite the many promising medical research findings concerning ME is inhumane and contradicts the purported values and core principles of medicine, including “do no harm”.

    Whatever the reason, it is nothing less than a sadistic, immoral and diabolical failure on the part of our worlds most developed nations. It is yet another indicator that the life and well-being of the people has little to do with the decisions of our leaders, within, and outside, our nations medical systems.

  6. The problem is that the NHS drs don’t believe ME or even EDS are really illnesses, there is a lot of ignorance

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