A woman is fighting for her life in hospital after doctors refused to let her see specialists that may be able to help her. She lives with severe chronic illness – myalgic encephalomyelitis (ME) and Ehlers-Danlos syndromes (EDS). So, her husband has issued a desperate cry for help on her behalf.
Sadly, her story will not be unfamiliar to some people. This is because NHS treatment for this disease is at best dire – and at worst, life threatening.
ME and EDS
ME is a chronic systemic neuroimmune disease, not dissimilar to long Covid. Medical professionals generally claim there is no known cure for ME. As the Canary previously wrote:
Some doctors have managed to get patients better. Yet only around 6% of people with ME have remission from the disease. But the cause of it is often clear. Because in around 50% of cases, people get ME following a viral infection. It’s almost as if the virus never leaves them. Some studies have shown people with ME have a constant, increased immune system response. It’s like the person’s body thinks it’s constantly fighting a virus which isn’t there.
You can read more about ME and its symptoms here.
EDS is a chronic, genetic, hereditary illness. It’s made up of a group of connective tissue disorders. This means that a person’s collagen is defective. As the Canary previously wrote, in EDS, collagen doesn’t work properly:
Imagine a bungee rope that doesn’t spring back up, or a hair band that isn’t taut. That’s what EDS is like. Most parts of a person’s body are not held in place correctly – so none of them work the way they’re meant to. There are currently 13 types of EDS. Some are life-threatening, like vascular EDS. Others are less aggressive, like classical. The hypermobile subtype is the only one without a genetic marker. But all are impairing in their own way.
You can read more about EDS and its symptoms here.
To live with one of these chronic illnesses is bad enough. However, to live with both and more can be catastrophic – as Sami Berry’s situation shows.
Sami: doctors refusing to give the right support
Sami formerly worked in the NHS before becoming severely ill. She lives with ME, EDS, and epilepsy. And since November 2022, she has been in hospital fighting for her life.
Sami is very concerned she is going into intestinal failure as severe ME and EDS has made her body unable to digest nutrients even through a feeding tube. NHS doctors are refusing to provide her with drugs that previously helped her regain nutritional levels, or refer her to a specialist. She is vomiting repeatedly, and cannot even keep 4ml down. It has been 26 days without food. Her blood sugar levels are dangerously low. Sami and her family are requesting that the hospital transfer her care to specialists who understand how to treat severe ME and EDS.
Some of the major complications with EDS are gastrointestinal. As the charity Ehlers-Danlos UK wrote, in some types of the illness the most severe form can be gastroparesis. This is where the stomach does not empty, meaning food cannot pass into the small intestine. The Mayo Clinic noted that:
Gastroparesis can interfere with normal digestion, cause nausea, vomiting and abdominal pain. It can also cause problems with blood sugar levels and nutrition.
It is unclear if this is what Sami is living with. However, if she did have gastroparesis and then had severe ME on top, this could make her critically ill.
‘Dying in front of my eyes’
Sami’s husband Craig said in a press release:
I am slowly watching my wife die in front of my eyes. The doctors at the hospital are refusing to provide her with drugs that previously helped her regain nutritional levels. Her epilepsy has returned after three years. Her consultant has said that he will not necessarily take the advice of the specialists, again with no explanation. The PALS [Patient Advice and Liaison Service], dietary, nursing team and general surgeons have all voiced confusion about what the doctors are doing. I’m terrified I’m going to lose my wife because the doctors refuse to treat her inability to absorb nutrients.
ME Action said of Sami’s situation:
Sami and her husband, Craig, have made the wrenching decision to go public with this story because they fear Sami will die if the NHS does not begin to take her situation seriously, and provide adequate care.
The organisation said in an update on its website that:
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.
Severe ME can have tragic consequences
However, the concern that ME Action highlighted is that people living with ME have previously died due to it:
- In 2021, Maeve Boothby O’Neill died from severe ME at the age of 27 after the NHS essentially let her starve to death. She was denied a feeding tube, and later denied total parenteral nutrition, which likely would have saved her life. An inquest into Maeve’s situation is expected to be held later this year. Maeve’s father wrote about his daughter’s tragic story for the Times.
- In 2018, Merryn Crofts died at the age of 20 after she starved to death due to severe ME.
- In 2003, 32-year-old Sophia Mirza died from severe ME after having been forcibly removed from her home and sectioned to a psychiatric ward, while the NHS failed to treat her underlying conditions that led to her death.
Tragically, two more people have recently died after living with severe ME as well.
Anna Fitzgerald-Clark died on Christmas Day 2022. She lived with severe ME, but little information exists online about her. She does have a page where people can donate to charity Action for ME – here.
Then, just after New Year’s 2023, Kara Jane Spencer also died. She was a talented singer-songwriter, who recorded an album to raise money for ME research. Her representatives said in a statement that:
In the end her body was too frail to survive. Her spirit remained strong till the last, and she faced the end with the same incredible courage that she showed throughout her illness.
Kara was a very special young woman who embraced life with love, generosity and endless determination. To know her was to know a unique human being, whose spirit never wavered despite the most tremendous suffering.
People can donate to Kara Jane’s campaign here.
It is Sami and her family’s fear that she, too, will end up so unwell that she eventually dies. However, it seems currently that the NHS hospital she’s in is failing to recognise this – which is of little wonder, given the scandal surrounding the treatment of both ME and EDS.
Chronic illness: chronically psychologised
ME has been marred by controversy – not least being the flawed and dangerous treatments which the National Institute for Clinical Excellence (NICE) only took out of its recommendations in 2021. Meanwhile, people living with EDS are often misdiagnosed, and some of the secondary conditions caused by the illness are not currently treated by the NHS – like atlantoaxial instability. However, medical professionals often treat both these conditions as psychological – that somehow, people are making their illnesses up.
As the Canary previously wrote of ME:
People living with it have for decades been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’. Much of this comes from the now-discredited PACE trial… It found that people could recover from the disease by having cognitive behavioural therapy (CBT). In other words, people living with a very-real, viral-based illness should just ‘think themselves better’. Essentially, the trial pushed the notion that the disease was part-psychosomatic or ‘made up’ by patients. But the trial’s findings haven’t held up, with its proponents accused by some of scientific fraud and causing potentially the “biggest medical scandal of the 21st century”.
It’s a similar story for EDS. As the Canary previously wrote:
The story of Antonia Payne-Cheney, whose mother I interviewed at length, is one example. Medical professionals disbelieved Antonia [who lives with EDS], branded her a “drug seeker” and said her mother was making her illnesses up. All of this was simply not the case. Part of this is down to professional ignorance. Some of it is due to the PACE trial’s findings also being applied to EDS. And some of it is down to the NHS not even recognising many of EDS’s cluster syndromes.
Sami may well be facing prejudice and disbelief based on both these illnesses.
Fighting for Sami – and every chronically ill person
Sami’s condition is clearly critical. She desperately needs an intervention from an external party – be that a charity, advocate, politician or other medical professionals. This needs to get her the specialist treatment her conditions warrant. Whether or not that happens remains to be seen. If you wish to support Sami, you can contact ME Action here.
However, the broader picture is that her situation is far from unusual. Doctors all too often neglect chronically ill and disabled patients. Research often misses vital clues to pathology. Worse, some research makes life for the people affected even harder. Moreover, the crossovers and links between these various conditions are sorely under-researched.
Until the medical profession banishes psychologisation, organisations spend more money on research, and governments and healthcare providers invest more in treatments, Sami and others will continue to suffer on the NHS’s watch. Everyone involved in ME and EDS must work together to ensure that no one goes through what Sami currently is, ever again.
Featured image via ME Action UK
