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I can't do the standing, arms above head etc. I have a shower stool that fits in my bath and I put it on an antislip mat and have grab rails.

This is desperately disappointing.

Interesting how we all try to find ways to manage washing ourselves. Before the pandemic I emplyed carers to come 2 or 3 times a week mainly to help me shower. I stopped them at the first lockdown and never restarted, as in the end with a high turnover of staff it was more exhausing explaining...

I confess I don't even try to reach my feet when sitting on a shower stool in the shower. The bits of me I can reach easily get a rub with flannel and liquid soap. The rest gets doused with shampoo from hair washing and water, and dried with a towel. That has to be good enough. Just showering at...

Your REHAB response made me snort with laughter.

How should I manage a person with severe or very severe ME/CFS? The symptoms experienced by people with severe or very severe ME/CFS are varied and debilitating, and these may fluctuate and change in symptom type and severity. The person's care and support plan should be flexible and reviewed...

I agree the summary is pretty awful. Looks like it was written by AI or someone with no clue about ME/CFS. Here's the management section: How should I manage a person with suspected ME/CFS? If a person has a suspected working diagnosis of ME/CFS: Explain that a diagnosis of ME/CFS can only be...

There is also a Benefits and Work article about the benefit reforms https://www.icontact-archive.com/archive?c=144836&f=2941&s=6745&m=1194290&t=9e9c98a7d9387eb5c584b7e81a15d03a3040ca2700682dadb514b7c01a8d57f0

The ME Association has produced a template letter for sending to your MP about the welfare reforms: Welfare Reform: Keep writing to your MP! July 4, 2025 We sincerely ‘Thank you' for all the letters you've sent to your MPs. However, please keep sending letters, as we need to ensure that they...

ME Association article: NICE release a new Clinical Knowledge Summary (CKS) on ME/CFS July 4, 2025 The National Institute for Health and Care Excellence (NICE) release a new Clinical Knowledge Summary on ME/CFS. Clinical Knowledge Summaries provide primary care practitioners with a readily...

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnosis Diagnosis Assessment Differential diagnosis Management Scenario: Management Background information Definition Causes Prevalence Prognosis Complications Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): Summary...

There is a third part article published on Substack now: The Danger of ‘Feeling Safe’: Long Covid and the Return of Psychosomatic Medicine Unpacking Sarno’s TMS Theory and Its Quiet Influence on Long Covid Narratives It's a good article that looks at the brain retraining cult including LP and...

One of the reasons I stopped driving is I no longer felt safe because of slower reaction times. I was also finding it physically taxing.

That description ignores the rapid fatigability in ME/CFS. My experience and my understanding from others is that our muscles may feel 'not too bad' when rested, but as soon as we start any activity using muscles they rapidly weaken and may feel heavy, aching, painful. That's separate from the...

How's that for a word salad of nonsense. Translation - pacing with randomly added drugs and vitamins.

I'm so sorry. You were brave to watch the debate. I could't bear to. Making this a money bill rather than a health and welfare bill is despicable. I have no words for the awfulness of the way they have framed the debate.

I agree. By giving any sort of green light to brain retraining programs, they are encouraging vulnerable people to put themselves in the hands of cult like organisations that use brainwashing techniques. This is not some soft, risk-free stress reduction exercise, it's hard sell stuff that tells...

For anyone like me who didn't immediately think what URT stands for, I googled it: Upper respiratory tract.

Ugh, that's awful. So ignorant and judgemental.

Some posts discussing how brain retraining is claimed to work have been moved or copied to: Brain Retraining treatment for ME/CFS and Long COVID - discussion thread