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Gibraltar Campion.

In 1992 the Gibraltar Campion was declared extinct due to the destruction of its habitat but, in 1994, it was rediscovered growing in the Upper Rock Nature Reserve. Since then, strenuous efforts have been made to continue its propagation and, thanks to the work of the Royal Botanic Gardens, Kew in London, it has now been re-introduced to the Rock of Gibraltar.

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Charities including the ME Association have long called for better nationwide training for doctors on the condition. Historically, it was considered by some to be a psychosocial illness and as such, The National Institute for Health and Care Excellence (NICE) recommended graded exercise therapy (GET) and cognitive behavioural therapy (CBT) as treatments. But studies found that GET can actually do more harm than good, pushing patients beyond their limits and causing them to crash. One Swiss study said that 'being told the disease was only psychosomatic' was the biggest contributor towards suicidal thoughts amongst patients.

After years of backlash and reports of patients being 'forced' into the treatment regimes and even sectioned for resisting, NICE back-tracked in 2021 and withdrew the advice surrounding GET and CBT. It now classes ME as physiological, and the NHS agrees. However, hospitals are not forced to adopt NICE guidelines and patients and charities believe that the idea of the condition all 'being in someone's head' still pervades.

Under the old guidelines, there were reports of parents being referred to social services for apparently encouraging their children to believe they were ill. Now, NICE has specific guidance for doctors, stating the should, "recognise that the following are not necessarily signs of abuse or neglect in children and young people with confirmed or suspected ME/ CFS: Disagreeing with, declining or withdrawing from any part of their care and support plan, either by them or by their parents or carers on their behalf. Parents or carers acting as advocates and communicating on their behalf."

The guidelines also urge medical staff to "recognise that symptoms of severe or very severe ME/CFS may mean that people cannot communicate without support and may need to choose someone to be their advocate and communicate for them."

Dr Charles Shepherd, an ME expert who was a member of the committee that prepared the new NICE guideline on ME/CFS, added: "Despite all the information on the management of severe and very severe ME in the new NICE guideline, many doctors are still not aware that people with severe ME often have difficulties with eating and swallowing. In addition they may have nausea and other gastrointestinal symptoms which makes eating and food digestion very difficult. As a result, they require expert nutritional management and may even require tube feeding.

"Sadly, difficulties with eating and swallowing, and consequent loss of weight, are still being misdiagnosed as a psychological eating disorder in some people with severe ME. People with severe ME are then being given totally inappropriate psychological treatment rather than the expert nutritional management they require. Misdiagnosis as a psychological eating disorder is both inappropriate and dangerous and contrary to what the NICE guideline is recommending."

Treatment plans for ME vary across the country as each NHS trust controls its own framework, but the NICE guideline should be 'taken into account,' according to guidance. Jason Brady of Blackwater Law, explained: "The NICE provides guidance of care to the NHS based on their own research and evaluations of health technologies, as well as the clinical effectiveness and value for money of different treatment options. They work to encourage the NHS to implement the recommendations that they believe will lead to the best patient outcomes.

"It is crucial however to understand that it is not a legal requirement for NHS trusts to follow or implement the guidance of the NICE. The guidelines produced by NICE do not, once published, override the individual responsibility and judgement of the health care professional. They are however expected to take them fully into account when they are deciding on a treatment plan for a patient."

A Department of Health and Social Care spokesperson said: "Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be incredibly disabling, especially for those who have severe symptoms which is why we are improving the care and support available.

"People with ME/CFS can be supported to manage their symptoms and maximise their quality of life, with guidance for clinicians available from in the National Institute for Care Excellence.

"We have been consulting on a cross-government ME/CFS delivery plan for England, which will include an expansion of research, improvements to services, better education of professionals, and a plan for improving attitudes to the condition within the health system.”

Source

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The Middlemist’s red, known as the rarest flower on earth, with it believed to be only two specimens of this species to exist.

It was imported from China as a luxury item in 1804, but was wiped from its native country.

Currently, the flower is found in only two locations: a garden in New Zealand, and a greenhouse in the UK. It has flowered for more than two centuries.

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ME has stolen the lives of other patients across the country, many of whom experienced medical neglect before their untimely deaths. Merryn Crofts died of severe ME just days after her 21st birthday in 2017.

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

Maeve Boothby O'Neil died aged 27 while battling severe ME. She was admitted to hospital three times, and each time she was discharged to her parents' care despite her rapid decline. Maeve's mum Sarah Boothby alleged at a pre-inquest hearing that her daughter's original consultant said there was 'nothing wrong' with her and told her Maeve was 'basically making it up'. An inquest into Maeve's death is due to take place in July.

Experts say the pattern of mis-diagnosis is common with severe ME patients, who often get wrongly diagnosed with an eating disorder. In a study reviewing ME in children, published by the Journal of Clinical Pathology, expert Jane Colby notes: "Myalgic encephalomyelitis has not uncommonly been mistaken for school phobia, anorexia nervosa, neglect, child abuse, Munchausen syndrome by proxy (fabricated or induced illness) or pervasive refusal syndrome. The common factor is often the perception of the illness as not capable of causing profound physical disability over a prolonged period.’”

Source:

https://www.mirror.co.uk/news/health/severe-killing-me-doctors-wont-32491644

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Turquoise Ixia viridiflora is very rare. Its habitats are often destroyed by human influence. As a consequence, its conservation status is vulnerable and is tending to worsen.

The flower is pollinated by specific scarab beetles known as monkey beetles.

The name turquoise ixia refers to the turquoise colour of the flowers, which is a rare colour for flowers.

“The cardinal symptom of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion.  PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting ~24 hours after the triggering event.  While PEM is often studied in relation to physical activity, cognitive overexertion or sensory overload may also initiate PEM.”

“People with ME experience a substantial loss of physical and/or cognitive function. The average person with ME scores as more disabled on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and cancer.  Someone with mild ME may be able to work full-time with accommodations; someone with very severe ME may be bedbound and have trouble communicating.”

“The hallmark symptom of ME is post-exertional malaise, a reduction in functioning and a severe worsening of symptoms after even minimal physical or cognitive exertion.”

“Other common symptoms include:

* Orthostatic intolerance

* Pain in the muscles and joints

* Headaches of a new type, pattern, or severity

* Cognitive symptoms such as confusion, difficulty retrieving words, poor working memory, spatial instability, and disorientation

* Sensitivity to light, sound or vibration, taste, odor or touch

* Gastrointestinal symptoms such as nausea or abdominal pain

* Muscle fatigability, weakness and fasciculation; poor coordination and ataxia

* Autonomic and endocrine symptoms such as poor temperature regulation, cold or heat intolerance

* Immune symptoms such as tender lymph nodes, recurrent sore throats, fevers, or flu-like symptoms, and new food or chemical sensitivities”

Source- https://www.meaction.net/learn/what-is-me/

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This beautiful red orchid is completely unique to the UK and is only found growing around the coastal areas of Cornwall. The Dragon’s-mouth is classified as endangered due to its extremely limited habitat. The species is at risk from coastal erosion, and climate change. It is a carnivorous plant, which means that it obtains nutrients from the insects that it traps in its leaves. This orchid is also a very difficult plant to grow in captivity, making conservation efforts even more challenging.

What is ME?

ME is a chronic disease that affects almost every system in people’s bodies – like the immune, nervous, digestive, and hormonal systems. Many of its symptoms majorly impact a patient’s day-to-day life – like cognitive impairment, profound and disabling fatigue, influenza-like symptoms, heart, lung, temperature, and blood pressure dysfunction, hypersensitivities, and digestive dysfunction.

However, the main symptom which sets ME aside from other illnesses is called post-exertional malaise (PEM), the NHS Scotland website says. Oddly, NHS England’s website makes no mention of this. PEM is a worsening of many, if not all, the body’s systems, as well as symptoms, after physical, mental, or emotional exertion.

Research has shown people with ME have a worse quality of life than many cancer patients, people living with type I diabetes, and stroke survivors.

Severe ME

In its worst form, people with severe or very severe ME often cannot eat or drink, are permanently bedbound or hospitalised, cannot sit or stand up, and are completely reliant on others for their care. However, crucially ME can kill people – and has.

In 2021, Maeve Boothby O’Neill died from very severe ME at the age of 27 after the NHS allegedly neglected her. Doctors denied her a feeding tube, and later denied total parenteral nutrition, which could have saved her life. An inquest into Maeve’s case is ongoing. Her father, journalist Sean O’Neill, wrote about his daughter’s story for the Times.

Source: https://www.thecanary.co/editorial/2024/02/24/severe-me-millie-lancaster/

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