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A commonly hypothesised pattern is boom-bust. The PACE crew found that 30% of PACE participants showed what they considered a boom-bust pattern on accelerometer data. Here are a few details from King E, Beynon M, Chalder T, Sharpe M, White PD. Patterns of daytime physical activity in patients...

About this bit quoted by @Art Vandelay above from Jon Stone's website about Vogt's recovery stories Have they? I was surrounded with them. Bombarded by tales of people doing the same things as me and just having different outcomes. One of the most dispiriting experiences I had was reading...

Yeah, they say

To continue the thought process here on whether any of the outcomes explain why we might switch into anaerobic respiration quicker... They explain that: So is this difference in number WBCs/uL in cerebrospinal fluid meaningful? Healthy controls mean 1.0 (standard deviation 1.124) vs ME/CFS...

I'd love to hear thoughts from @Jonathan Edwards, @Simon M, @hibiscuswahine, @Snow Leopard, @Tom Kindlon and others on the data being discussed on this thread, ie the data from the NIH Intramural study https://www.clinicaltrials.gov/ct2/show/results/NCT02669212. Perhaps we need a new thread as...

If my experience of endoscopies is anything to go by, 3 of those 4 hours might be a glorious sleep! And another 1/2 hour or so will be waiting. Is it an upper endoscopy your daughter is having, ie going through mouth to look at stomach? Worth checking as endoscopy can refer to colonoscopy or...

Yep. I came across a table in a case study yesterday that may be relevant. The case study itself is on an 11 year old with nausea and vomiting (does not have ME, ends up being diagnosed with coeliac and Addison's). But figure 1 is interesting - the impression I get is that gastroenterologists...

I really understand the point you're making, but I think physicians are readers of the daily paper. I think avoiding the whole "what is it" entirely and going straight to "Listen, people with ME who have difficulty getting adequate nutrition are not currently getting good care, let's lay out...

Pendergrast et al's table 4 reports percentages of housebound and non-housebound people with ME and CFS reporting bloating, stomach pain (under Pain subheading), "irritable bowel problems" and nausea (under Autonomic subheading), losing or gaining weight without trying and no appetite (under...

Like many others, it seems, I go from normal gait to very elderly lady (when in PEM). For me, this transition is most obvious between the morning of a medical appointment - walk normally to bathroom, wardrobe and wheelchair, and when I get back - hobble back into bed, hunched over, slow...

On this point: I think it's important to distinguish between dietitians (who are also nutritionists) and nutritionists (who are not dietitians) - the ones we want here are dietitians - they're the ones who work in hospitals with sick people on NG tubes, PEGs, TPN etc, as well as everyone else...

The Malnutrition Universal Screening Tool (MUST) would be helpful for flagging those most at risk: https://www.bfwh.nhs.uk/our-services/community-nutrition-and-dietetics/nutritional-support/ I used the calculator myself, and my MUST score was 4, meaning that I was at high risk of malnutrition...

Regarding safe reinsertion of NG tubes, see these references (copied from https://imj.ie/wp-content/uploads/2021/09/An-Audit-of-Adherence-to-Nasogastric-Tube-Safety-Standards-in-a-Radiology-Department.pdf) 1. The National Patient Safety Agency alert NPSA/2011/PSA002 ‘Reducing the harm caused by...

So glad you're bringing this up. I find it a bit alarming that there has been little attention to it when the people with ME who do die all seem to have severe GI problems at the end. I was delighted to see that Fluge, Mella and co have taken an interest...

The submitted version of this article can now be seen here: SLAM_Paper_6_CBRQ_Psychometric_Properties_R2_BCP_v1.3_CLEAN.pdf (bath.ac.uk) and the supplementary materials can be downloaded here: Psychometric properties of the Cognitive and Behavioural Responses Questionnaire (CBRQ) in adolescents...

So sorry you’re experiencing this. I have no idea whether what you have is typical, or what I have is typical, but here’s my experience and you can judge how it might relate to yours. I have had noise intolerance/sound sensitivity/hyperacusis since day 0 of the infection that triggered my...

[If I've stumbled through brain fog into the wrong thread, feel free to put this in the right place, moderators!] I recently found these (noise-reducing) silicone coasters and plates. I use them on my bedside table and anywhere I/carers put jugs/glasses etc. I use the plates as extended...

Or is it? This just in: https://www.rte.ie/news/dublin/2022/0401/1289783-dublin-zoo-pandas-leopards/

We go for extra-deep fitted sheets in 100% cotton, and M&S are the most reliable source we've found. Mistakenly bought regular and deep a few times over the years and they're just not deep enough. We wash at 60 degrees 'cos of allergies, and they last. The fitted sheets always outlast the set...

I don't tweet but here's what I would reply: Frustrating. Now imagine doing all of that with a chronic illness that limits your energy and fogs your brain. We are usually exactly as disabled for exactly the same reasons every time we have to fill out exactly the same forms for benefits we wish...