Spread the word on the different ways to take part in #DecodeME – We are here to help
The questionnaire takes on average 16 minutes to complete and you can leave and come back to it – your progress will be saved.
Take part online here: https://bit.ly/3SCOAk1
Get in touch with the team to request a paper version or arrange telephone support.
Email: [email protected]
Phone: 0808 196 8664
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This study unfortunately is still a long way from reaching its target of 20,000 people with ME/CFS plus 5000 people who got ME/CFS following Covid
It is open to anyone in the UK with a diagnosis of ME/CFS who was aged 16 or more.
2-minute video: Chronic Fatigue Syndrome is a terrible name
From: https://www.youtube.com/watch?v=j_6mhNZr_AU
Transcript:
Chronic Fatigue Syndrome is a terrible name for a disease. Doctor Anthony Komaroff, who was part of the original group that came up with the name, said it was a big mistake because it trivializes and stigmatizes the illness.
The name Myalgic Encephalomyelitis had been in use since the nineteen fifties, but in nineteen eighty eight the CDC decided on a new name, Chronic Fatigue Syndrome which does not convey the severity or the nature of the condition.
ME is not just fatigue; it's a serious, long term disease with a wide range of symptoms.
Fatigue isn't the most important symptom either. Patients have an energy impairment that dramatically limits their activity. When they exceed their available energy, they experience a worsening of symptoms that can last for days, weeks, or even months.
Everybody experiences fatigue, which means people often assume it's just being tired all the time.
But the fatigue patients experience is completely different, It's a severe, persistent, exhaustion that can be profoundly disabling.
Laura Hillenbrand, the award winning author said it's like comparing a match to an atomic bomb.
To make things worse, the name is often shortened to Chronic Fatigue, which is not a disease, but a symptom associated with many conditions, like Cancer and Depression.
The name of a disease is important because it can influence people's attitudes, including those of healthcare professionals.
Many doctors are dismissive, making comments like “I'm fatigued all the time too.”
The diagnostic criteria for Chronic Fatigue Syndrome have also been criticised because they can include people who don't have ME. This has led to unreliable research, as well as confusion among patients and healthcare professionals.
The majority of patients prefer the term ME and most health agencies and researchers now use the term ME/CFS.
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Adam, the creator, is on various other social media platforms e.g.
https://www.youtube.com/c/BrokenBattery
https://www.facebook.com/brokenbattery
https://twitter.com/ABrokenBattery
https://disabled.social/@[email protected]
i am somewhat team #virgin colin bc in the books all of the bridgerton boys are relatively the same exact fucking person and it bored me. we don't need 8 seasons of a rake being the male love interest.
colin is a romantic. he wouldn't even kiss marina and he was infatuated by her. i sincerely doubt he is completely innocent (especially with his travels) but i still think him a virgin/ not a rake.
i know a lot of people don't like how they "gave colin's personality to benedict" but they really were not that different in the books?? like the only thing that separates their personalities is benedict is an artist and colin likes food and travels?? i like that the show is making each of the bridgertons different from each other. it makes it so much more interesting. no offense but reading the books and literally all of the male love interests have like this primal instinct over the female love interests and it was weird and tiring to read. it's BORING. so i like that colin is young and annoying because it shows that he is just finding himself whereas benedict and anthony already had plenty more time to soul search and experience life.
i hate purity culture. and i don't actually care if he is a virgin or not (even if its heavily implied) because its a fictional tv show. i just don't want a rake that has this weird sexual high ground over the female character.
I have a love hate relationship with kanji, I enjoy writing it I find it relaxing. Shame I can never recall the meanings though but, I guess that will come.
Frebregency 2023 group read is Evelina - Frances Burney.
I'm looking forward to reading my first regency era novel. The read-a-thon starts on the 1st of February and finishes on the 28th of February. The organisers of this read-a-thon have also arranged for there to be a zoom meeting at the end of the month, details can be found on YouTube - search "frebregency 2023" for more details.
I'm hoping this read-a-thon will be as popular as Victober.