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For me the difficulty is identifying the very narrow range of the balance of activity (physical, cognitive, social, emotional, infection) and rest (including sleep) which doesn't Immediately excerbate symptoms Trigger PEM Trigger a relapse Contribute to the cumulative "activity" load which...

Menopause early 50's. I've experienced a significant worsening of my orthostatic symptoms. Orthostatic hypotension. Orthostatic tachycardia. 170 + bpm on stand test, with increase of over 50 bpm when upright. Reduced emotional resilience. Adrenaline surges. Worsening of body temperature...

I have severe M.E. I've been on Fludrocortisone for about 18 months. It has helped with my orthostatic hypotension. But only helped a bit with my orthostatic tachycardia. The addition of low dose BB (bisoprolol) last September has reduced the tachycardia, but still some way to go. Had some...

@Kalliope they seem to be very cavalier in the UK about changing brands of BB. I was astonished to discover that despite barcodes pharmacies don't record which brands they dispense to patients. Sooner or later there will be a significant problem with a particular batch and there will be a...

I've been on low dose BB (bisoprolol) since September and they have helped my orthostatic symptoms greatly. Spikes in HR, adrenaline surges, average HR, nausea, lack of emotional resilience, all improved. Made a big difference to QofL. And very limited energy not sucked up coping with...

This is very similar to my experience @Wonko I try to avoid "activity" (physical, cognitive, emotional) in the morning as these activities increase my HR. But when I then lie down my resting HR is elevated, usually for the reminder of the day. As a result any further activity leads to higher...

This is the Local Education Authority School Attendance dept for Bath where I think the FOI needs to go: https://www.bathnes.gov.uk/services/schools-colleges-and-learning/support-parentscarers-educational/children-missing-educatio-7 But if any Academies were included in the study you may need...

Have now listened to the first three episodes. All excellent listening with lots of interesting information. The format works well with the guests given the time to fully explain their areas of expertise. Possibly a final question could be to ask the guests if there is anything further they...

Also, CBT/GET was described by PDW as OMT which I understand to be "optimum (or optimal) medical treatment" So it is not described to the reinsurer as "a treatment" but the optimal treatment. And of course there is the terminology around the word treatment rather than management.

A couple of further points regarding all this: It is the reinsurer that calls the shots on these insurance claims. So Swiss Re will likely be a reinsurer for many different insurers. The impact of somebody working for a reinsurer is therefore likely to be much greater than one working for an...

There are also double standards regarding patient feedback. With our local ME community service positive comments are taken as read, but for years no action was taken about negative comments as the provider maintained that to take action they had to have a dialogue with the patient. This was...

I found it interesting in that it discusses the effect of the female reproductive system on ME. My orthostatic symptoms have worsened during menopause, but it may just be coincidence. I have wondered if stopping the POP affected my fluid retention but GP was dismissive. Not seen a any...

Worth a read. Considers how patient feedback is viewed by health professionals and managers and cultural problems that PWME will likely recognise. and https://blogs.bmj.com/bmj/2019/02/05/miles-sibley-the-language-used-to-describe-patient-feedback-has-a-detrimental-influence-on-safety-culture/

How low is the bar for harassment to go? http://www.virology.ws/2019/02/05/trial-by-error-and-another-prebuttal/?fbclid=IwAR0eDWOvTVqQ-ZggHEg5ko90qnvcOEKGrEfYTPPqMUC3Q7kFt6OlRuyD2J4 David Tuller on the upcoming article.

Blog in the BMJ, LSHTM tweeted about it today. The "evidence" for patient blaming does not stand up to scrutiny..... https://blogs.bmj.com/bmj/2019/02/01/educating-patients-or-blaming-them-public-education-campaigns-on-antibiotic-resistance/

Pretty good I thought, especially this

What I think it means that Commissioner's (who purchase care) should encourage Providers (who Commissioners pay to deliver care, and include CICs and private sector) to set up services to deliver social prescribing. Commissioners agree to pay £x per annum and it is then up to the Provider to...

One thing I've noticed as someone with ME is that lack of insight many health professionals seem to have regarding the limits of their knowledge. On top of that they don't respect my knowledge. This includes GP's, therapists and consultants. They seem very unwilling to say "I don't know". Not...

Thanks @Lucibee that's a good document that I'd not seen before.

If your daughter is light headed and tachycardic when upright have you considered orthostatic intolerance / POTS?