Adam pwme
Senior Member (Voting Rights)
Moderator note:
This video was taken down and a new one has gone up, details are in this thread
https://www.s4me.info/threads/updated-what-is-me-video.13534/
New Video (7 mins) : What is ME? Experts provide a brief overview of symptoms, severity, problems with exercise, guidelines and pacing. Aimed at people to share with friends and family as an introduction to the disease and how severe it can be.
Myalgic Encephalomyelitis (ME) commonly called chronic fatigue syndrome is a life-altering debilitating disease affecting the brain, the immune system and energy metabolism. The defining symptom of ME is that even minimal exertion can cause a flare in symptoms (a crash) that can last for days, weeks or even months.
Severity ranges from mild to very severe. Around 25% are house or bedbound, unable to properly care for themselves, sometimes for many years or decades at a time. The majority of severely affected patients are unable to access any services and are not offered home visits or specialist inpatient care [1]. People with ME have a lower quality of life than people with Stroke, Cancer, Heart disease, Multiple Sclerosis, Reumatoid arthritis [2].
The WHO classified ME as neurological in 1969 but 80% of doctors still believe its psychosomatic [3]. Many doctors still don't know that over the last 35 years there have been over 9000 scientific publications that compared people with the illness to healthy people and they find a whole variety of abnormalities, like energy metabolism [4].
Dr Nina Muirhead ME Patient and Specialist Surgeon in Dermatology - The NICE guidelines “do not fit” with the patient experience and “perpetuated my misunderstanding” of ME by recommending Cognitive Behavioural Therapy and Graded Exercise [5]. NICE is currently updating its guidance for ME and is expected in October 2020 [6]. The Centers for Disease Control and Prevention (CDC) in the US dropped Graded Exercise and Cognitive Behavioural Therapy as treatments for ME in 2017 [7].
Patient surveys consistently report that Graded Exercise makes over 50% of patients worse [8]. “In the absence of effective treatments, patients who are given a period of enforced rest from the onset have the best prognosis” [9]. Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management” [10].
REFERENCES
[1] http://researchbriefings.files.parliament.uk/documents/CDP-2019-0014/CDP-2019-0014.pdf
[2] https://www.meaction.net/2015/08/01/me-patients-have-among-the-poorest-quality-of-life/
[3] https://podcasts.apple.com/gb/podcast/episode-four-dr-nigel-speight/id1374903449?i=1000430064953 (4 mins 50)
[4] http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf
[5] https://www.rcplondon.ac.uk/news/do-you-really-believe-me
[6] https://www.nice.org.uk/guidance/indevelopment/gid-ng10091
[7] https://www.meassociation.org.uk/20...recommended-treatments-for-mecfs-11-july-2017
[8] https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
[9] https://www.mdpi.com/2075-4418/9/4/124/htm
[10] https://www.meassociation.org.uk/wp...No-decisions-about-me-without-me-30.05.15.pdf
This video was taken down and a new one has gone up, details are in this thread
https://www.s4me.info/threads/updated-what-is-me-video.13534/
New Video (7 mins) : What is ME? Experts provide a brief overview of symptoms, severity, problems with exercise, guidelines and pacing. Aimed at people to share with friends and family as an introduction to the disease and how severe it can be.
Myalgic Encephalomyelitis (ME) commonly called chronic fatigue syndrome is a life-altering debilitating disease affecting the brain, the immune system and energy metabolism. The defining symptom of ME is that even minimal exertion can cause a flare in symptoms (a crash) that can last for days, weeks or even months.
Severity ranges from mild to very severe. Around 25% are house or bedbound, unable to properly care for themselves, sometimes for many years or decades at a time. The majority of severely affected patients are unable to access any services and are not offered home visits or specialist inpatient care [1]. People with ME have a lower quality of life than people with Stroke, Cancer, Heart disease, Multiple Sclerosis, Reumatoid arthritis [2].
The WHO classified ME as neurological in 1969 but 80% of doctors still believe its psychosomatic [3]. Many doctors still don't know that over the last 35 years there have been over 9000 scientific publications that compared people with the illness to healthy people and they find a whole variety of abnormalities, like energy metabolism [4].
Dr Nina Muirhead ME Patient and Specialist Surgeon in Dermatology - The NICE guidelines “do not fit” with the patient experience and “perpetuated my misunderstanding” of ME by recommending Cognitive Behavioural Therapy and Graded Exercise [5]. NICE is currently updating its guidance for ME and is expected in October 2020 [6]. The Centers for Disease Control and Prevention (CDC) in the US dropped Graded Exercise and Cognitive Behavioural Therapy as treatments for ME in 2017 [7].
Patient surveys consistently report that Graded Exercise makes over 50% of patients worse [8]. “In the absence of effective treatments, patients who are given a period of enforced rest from the onset have the best prognosis” [9]. Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management” [10].
REFERENCES
[1] http://researchbriefings.files.parliament.uk/documents/CDP-2019-0014/CDP-2019-0014.pdf
[2] https://www.meaction.net/2015/08/01/me-patients-have-among-the-poorest-quality-of-life/
[3] https://podcasts.apple.com/gb/podcast/episode-four-dr-nigel-speight/id1374903449?i=1000430064953 (4 mins 50)
[4] http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf
[5] https://www.rcplondon.ac.uk/news/do-you-really-believe-me
[6] https://www.nice.org.uk/guidance/indevelopment/gid-ng10091
[7] https://www.meassociation.org.uk/20...recommended-treatments-for-mecfs-11-july-2017
[8] https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
[9] https://www.mdpi.com/2075-4418/9/4/124/htm
[10] https://www.meassociation.org.uk/wp...No-decisions-about-me-without-me-30.05.15.pdf
Last edited by a moderator: