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New Forum Software Installed (Still a few issues but reopening the forum) More details.
New Video: Very Severe ME
- Thread starter Adam pwme
- Start date
Adam pwme
Senior Member (Voting Rights)
Very Severe ME/CFS is a debilitating condition causing profound suffering and life-threatening symptoms.
Patients are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to ingest food and need to be tube fed [1].
Most doctors have had no formal training; many think it’s psychological and some don't even believe in the condition. Misdiagnosis and inappropriate management are common. Recently, there have been two high-profile cases of patients being refused support [2] and an inquest into the death of a person due to medical neglect is currently ongoing [3]. The NICE Guideline has more information including special sections relating to Severe and Very Severe ME/CFS [4].
1. https://www.mdpi.com/2227-9032/9/4/459
2. https://archive.li/2023.02.28-22181...-dying-of-starvation-under-nhs-care-kkdwjbkl2
3. https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/
4. https://meassociation.org.uk/wp-con...ine-on-MECFS-An-MEA-Summary-December-2021.pdf
Patients are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to ingest food and need to be tube fed [1].
Most doctors have had no formal training; many think it’s psychological and some don't even believe in the condition. Misdiagnosis and inappropriate management are common. Recently, there have been two high-profile cases of patients being refused support [2] and an inquest into the death of a person due to medical neglect is currently ongoing [3]. The NICE Guideline has more information including special sections relating to Severe and Very Severe ME/CFS [4].
1. https://www.mdpi.com/2227-9032/9/4/459
2. https://archive.li/2023.02.28-22181...-dying-of-starvation-under-nhs-care-kkdwjbkl2
3. https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/
4. https://meassociation.org.uk/wp-con...ine-on-MECFS-An-MEA-Summary-December-2021.pdf
Adam pwme
Senior Member (Voting Rights)
Thanks Sly I've fixed that now.