United Kingdom: ME Association news

Trish said:
It's good that they are challenging this research, but I don't think there's any research evidence to support this:

I know the NICE guideline says it can be offered, but I don't think it should be repeated without the warning that it can also cause harm, as it did to me.
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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?
 
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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
https://twitter.com/user/status/1731629328926978436
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I don’t think anyone has posted about this before. A change of approach by ME Assn.
Some time ago (years??) I remember discussing information about ME available from different charities including ME Association one of the main criticisms of ME Assn was that nearly all their leaflets had to be paid for rather than free.

I saw recently they are now free to download
https://meassociation.org.uk/free-me-cfs-literature/
 
NelliePledge said:
I don’t think anyone has posted about this before. A change of approach by ME Assn.
Some time ago (years??) I remember discussing information about ME available from different charities including ME Association one of the main criticisms of ME Assn was that nearly all their leaflets had to be paid for rather than free.

I saw recently they are now free to download
https://meassociation.org.uk/free-me-cfs-literature/
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I always thought it was a shame that the leaflets were paid for and needed to be sent through the post so its great they can be downloaded now,
 
NelliePledge said:
I don’t think anyone has posted about this before. A change of approach by ME Assn.
Some time ago (years??) I remember discussing information about ME available from different charities including ME Association one of the main criticisms of ME Assn was that nearly all their leaflets had to be paid for rather than free.

I saw recently they are now free to download
https://meassociation.org.uk/free-me-cfs-literature/
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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.
 
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From the MEA's latest newsletter:
We are looking for people with ME/CFS and their carers to give their opinions about creating some new ME/CFS good practice guidelines for psychologists. These guidelines are being produced by the British Psychological Society (BPS) with the help of Action for ME and the ME Association.

While ME/CFS is not a psychological condition, many people with ME/CFS see a psychologist to help them learn how best to live with the condition or for other reasons unrelated to ME/CFS. We wish to ensure that these people receive the best current advice, which adheres to the NICE Guideline on ME/CFS, about topics such as pacing and symptom management.
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It is extremely important that we have involvement from people with ME/CFS and their relatives, friends and carers. We want your input into what should be included in the guidelines and quotes which we can include to help psychologists and other professionals understand what it is like to have ME/CFS.

We feel it is a positive step forward that the UK's leading psychological organisation is working so closely with people with ME/CFS to co-produce guidelines.
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The deadline to complete this survey is 09 October 2024. However, if possible we would appreciate it if you are able to complete the survey by 15 September so that we are able to begin analysing responses in time for our first co-production meeting with the BPS.
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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
 
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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.
Kristian Sommerfelt, Trude Schei, and Arild Angelsen used the study to assess the symptom burden, capacity for activities of daily living (ADLs) and whether there are any supportive measures for those severely and very severely affected ME/CFS.

The research was published in February 2023 and concluded that the “most severely ill ME/CFS patients are an extremely vulnerable group. Their symptoms are devastating, resulting in a lack of capacity for social interaction and quality of life. Frequent disbelief in symptoms from healthcare workers and inadequate care and handling further aggravate the patients’ and their families’ situation. These patients, who would best have demonstrated the basic disease characteristics and symptoms of all ME/CFS patients, are, sadly, generally invisible to the rest of society.”

Please see the PDF to the research study entitled Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care:
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Norwegian team of researchers are presented with the Howes-Goudsmit Award - The ME Association

congrats @trudeschei
 
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
 
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