United Kingdom: ME Association news

Agree 100%

it’s time people are brave enough to say it doesn’t work without feeling they have to add another lie as a fop. Which is then used to offer something which is harmful when it’s the last thing someone needs as ‘the only treatment’ for something most don’t have instead of focusing on what support ie basic measures and monitoring and help with adjustments CAN make a difference

good monitoring and adjustments and help with forms, and confirming our requests for certain processes to adapt to the needs of those need to access them are needed by all

instead because people are afraid of darvo from the anti-psychology, anti-mental health and health bunch who want to treat disabled people as hysterical women who need educating how to get themselves together and act better we end up with this nonsense (and pretend that is 'mental health' instead of an attack on mental health and a weaponising of the label) - leaving in staff and in charge the very bigots who think this is ‘help’ and certainly didn’t sign up to a job being gently listening and supportive but to motivate out of their bad negative thinking in heir mind. These people won’t be told because they don’t want that job. And even if they are they won’t do it and will rail against it

why are they being proppped up like this?

 

ME Association

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The ME Association Annual General Meeting: Chairman’s Statement

This year we have said goodbye and a well-earned retirement to Tony Britton, our fundraising manager, after 20 years with us. Hilary Briars, our ME Connect Manager, is leaving us this month, to spend her retirement doing those things she has never had time to do before. I shall miss her calm logic and wonderful friendly voice.

In place of our retiring trustees, Nicola Anson, and Rick Osman, we welcomed Georgina Evans and Michael Mitchell as associates. With Rick Osman, our Vice-Chairman, leaving the Board, David Allen was unanimously appointed to take up that role.

https://meassociation.org.uk/agmm
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid #PostCovid #MEAssociation

 

They were available to download even if some were paid for - it wasn’t just so they could be sent but an income stream.

 

The ME association xmas appeal was for advocacy and information rather than research. I assume that has been used to cover more of these costs. It raised £50 000. Last years xmas appeal was to give out hampers.

 

Merged thread

Understanding the impact of myalgic encephalomyelitis/chronic fatigue syndrome

https://www.openaccessgovernment.or...halomyelitis-chronic-fatigue-syndrome/174788/

We spoke to Dr Charles Shepherd, Hon Medical Adviser at ME Association, member of the NICE guideline committee on ME/CFS and DHSC Delivery Plan on ME/CFS Working Group, about the impact of myalgic encephalomyelitis/chronic fatigue syndrome and why more needs to be done to address gaps in care and research

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a disabling, multisystem, and often long-term illness that involves the brain, muscle, and immune system. The composite term ME/CFS is often used. However, the patient community and many doctors regard the way in which ME was renamed and redefined as CFS in the 1980s as being inappropriate and harmful because CFS can easily lead to people with unexplained chronic fatigue being given this diagnosis.

People with ME/CFS often describe how their health failed to recover following an acute viral infection – the key diagnostic symptoms being activity-induced fatigue, cognitive dysfunction/brain fog affecting short-term memory, concentration and word-finding abilities, unrefreshing sleep, pain in the muscles, nerves or joints and post-exertional malaise – where exceeding physical or mental limitations leads to a delayed exacerbation of symptoms.

Other common symptoms include problems with balance and remaining upright (orthostatic intolerance), abnormal control of pulse and blood pressure (postural orthostatic tachycardia syndrome) and poor temperature control.

These core symptoms are also often found in long COVID, with research now indicating that around 50% of people with long COVID also meet the diagnostic criteria for ME/CFS. Epidemiological research suggests that at least 250,000 people have ME/CFS, with many starting their illness in early adulthood. Children and young people are also affected, and ME/CFS is one of the common causes of long-term sickness absence from secondary school.

Symptoms often fluctuate on a daily, weekly and monthly basis, and there is a wide range of severity. Most people with ME/CFS are unable to continue in full-time employment or education. Around 25% have severe or very severe ME/CFS – where they are housebound or bedbound and may even require tube feeding.

Overall, there is a significant reduction in quality of life, and prognosis is poor, with only around 5-10% making a full and sustained recovery.

 

It's good to see that final sentence, which often gets missed out of articles.

 

"We have engaged a distribution company to ensure leaflets and posters are displayed in 3,000 GP surgeries in the UK. This will mean that we will know material is on display and that as leaflets are used, they can be replaced, and usage monitored"
https://meassociation.org.uk/2024/0...thcare-for-people-with-me-cfs-and-long-covid/

 

From the MEA's latest newsletter:

MEA link: https://meassociation.org.uk/6dso
Survey: https://forms.gle/TsQBGBYKxMGeb1eS6

Post copied to start a new thread here:
UK: British Psychological Society survey on their planned new guidance on ME/CFS

 

The ME Association are pleased to announce we have awarded a Norwegian team of researchers the Howes Goudsmit Award for their extensive work and commitment to conduct research for severe and very severe ME/CFS patients in Norway.

Norwegian team of researchers are presented with the Howes-Goudsmit Award - The ME Association

congrats @trudeschei

 

how nice stating the blood obvious is now award worthy .

 

These three researchers Have done great work including their recent pan- European patient survey of Oval 11,000 people. Apart from looking at experiences of treatments and getting social care, they also showed The adolescence and midlife age peaks found in the earlier Norwegian study Replicated. (Though the early peak was only seen Norway, the Netherlands and the UK.

https://twitter.com/user/status/1831366796148142163

 

Might be bloody obvious to us but it's not obvious to others because it hasn't been previously stated in the scientific literature. We need more studies like this that report on the reality of ME/CFS.

 

It's definitely a discipline where telling the simple truth is the most radical act. Well deserved and courageous.

A discipline where telling lies and bullying sick people into misery and death gets you awarded and celebrated by your peers.

Only in politics, business... and medicine.