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Found 24 results
  1. News Article
    A mother has said an NHS hospital failed to offer her daughter adequate pain relief in a pattern of poor treatment that left the teenager suicidal. Ella Copley, 17, from Tingley, West Yorkshire, has suffered from ME (myalgic encephalomyelitis), sometimes known as chronic fatigue syndrome, for seven years. She has been in Leeds General Infirmary since March, when she was taken there by ambulance with an infection later diagnosed as sepsis. Her mother, Joanne McKee, 49, said the treatment Ella had received “feels like neglect and abuse”. She has posted videos on social media of the tee
  2. News Article
    The National Institute for Health and Care Excellence has issued an unprecedented implementation statement1 setting out the practical steps needed for its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS)2 to be implemented by the NHS. Such statements are only issued when a guideline is expected to have a “substantial” impact on NHS resources, and this is thought to be the first. It outlines the additional infrastructure and training that will be needed in both secondary and primary care to ensure that the
  3. News Article
    A health watchdog has scrapped a previous recommendation of graded exercise therapy for ME. The National Institute of Health and Care Excellence (NICE) has published a long-awaited and contentious final update to guidance on treatment. Many patients with ME or chronic fatigue syndrome (CFS) say the therapy, which encourages patients to slowly increase their levels of activity, makes their condition worse. The advice was due out in August, but NICE pulled the publication at the last minute. At that time, NICE said the delay was necessary to allow more conversations with pati
  4. Content Article
    The guideline identifies the symptoms of ME/CFS as debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (‘brain fog’). It says that people with all four symptoms that have lasted 3 months or more should be directed to a ME/CFS specialist team (in the case of children this should be a paediatric specialist team) experienced and trained in the management of ME/CFS to confirm their diagnosis and develop a holistic personalised management plan in line with this guideline. People with ME/CFS should recei
  5. News Article
    In recent months, long Covid has received a great deal of media and public attention. Research has found that as many as one in four of those infected with Covid suffer from chronic long-term symptoms, including headaches, dizziness, abdominal pain, heart problems, fatigue, anxiety, depression, cognitive impairment and other conditions. It is a difficult and complex illness, and we must do much more to help those who are struggling with it. At the same time, it is important to realise that rather than being a strange special case, long Covid is probably part of a broader phenomenon that a
  6. News Article
    Dr Kelly Fearnley caught COVID-19 in November 2020, after being redeployed to work on a coronavirus ward. Ten months on, she’s still living with debilitating symptoms of the condition known as long Covid. The latest estimates, published in June, suggest more than two million people in the UK have had long Covid since the pandemic began, while figures released by the Office for National Statistics in April show that more than 120,000 of those are NHS staff. Dr Fearnley discusses with iNews her experience of being taken to hospital after becoming seriously unwell. Dr Fearnley had a hig
  7. News Article
    Long Covid is no respecter of youth, health or fitness. It afflicts more women than men but it can strike anyone down, including people whose initial infection seemed mild, or even asymptomatic. In some cases, long Covid could mean lifelong Covid. The effects can be horrible. Among them are lung damage, heart damage and brain damage that can cause memory loss and brain fog, kidney damage, severe headaches, muscle and joint pain, loss of taste and smell, anxiety, depression and, above all, fatigue. We should all fear the lasting consequences of this pandemic. Long Covid is shorthand f
  8. News Article
    As more people suffer lasting symptoms from Covid including fatigue, ME patient advocates fear they will get bad advice, Based on current estimates, about 10% of COVID-19 patients develop lasting symptoms, one of the most common being fatigue. The underlying mechanism is still unclear, but possible explanations include reduced oxygen supply to tissues caused by heart or lung damage, or muscle weakness from prolonged bed rest. However, some doctors are increasingly concerned about the overlap between long Covid and another largely virus-triggered illness: “It’s extraordinary how many
  9. Content Article
    In this blog we will focus on several issues where there is a clear overlap between pain and patient safety concerns, inviting further debate and collaboration on this important topic through a series of questions. Consenting to treatment Consenting to treatment is vital to respecting the rights of the patient and ensuring safe care. It is also one area where we see evidence of how patient safety and pain issues can overlap. A recent example of this can be found in the publication of last month’s report of the Independent Medicines and Medical Devices Safety Review, First Do No H
  10. News Article
    A controversial exercise technique used to manage chronic fatigue syndrome is no longer being recommended by National Institute for Health and Care Excellence (Nice). The decision to stop recommending graded exercise therapy (GET) – which involves incremental increases in physical activity to gradually build up tolerance – represents a crucial win for patient advocates who have long said the practice causes more harm than good. Patient groups have argued that the use of exercise therapy suggests that those with chronic fatigue syndrome (also known as ME) have no underlying physical p
  11. Content Article
    The ME Association has produced a leaflet which includes guidance on the following: what is PVF and PVFS? what are the symptoms of PVF and PVFS? PVFS and possible progression to ME/CFS management of PVF and PVFS convalescence activity management mental wellbeing nutrition sleep work and education finances drug treatments when to check with your GP research into PVF and PVFS further information.
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