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The problem with the BACME events is that they are always members only.

Just a reminder, or for those that had missed it: I wrote about BACME and the dysregulation 'model' here: https://domsalisbury.github.io/mecfs/bacme_dysregulation/

https://bacme.info/event/severe-and-very-severe-me-cfs-workshop/ Upcoming event: Severe and Very Severe ME/CFS workshop Facilitated by Dr Melissa Sargaison (specialist physician and BACME Board member), Ceri Rutter (BACME PPI Lead) Anna Gregorowski (Consultant Nurse and BACME Chair); Sue...

Ah ok. I wonder if she's currently working on ME/CFS. I think perhaps not. I can't see any publications on ME/CFS since 2020.

Interesting to see what Julia Newton is working on these days.

Like MyChart, I suspect MyCare is another version of a patient portal that some trusts are using. But no, in my case it is neither of these and it's just called the patient portal. It seems my issue is not going to apply to others because it's not the same software system / app.

Thanks. I've not heard of this. Looks like it is only used by certain trusts.

Thanks. Might post on Reddit. Are you saying you can see your hospital invite letters and then confirm, rebook, or cancel your hospital appointments in the NHS App? I can see letters from consultants etc in my NHS App, but this is different.

Not really sure which sub-forum to post this in, but anyway.... Some of you may be familiar with the NHS patient portal, which is used to manage hospital appointments. This is not the NHS app. Usually, you will receive a text message telling you of a new hospital referrals/appointment. The...

Related editorial (also paywalled): https://www.ahajournals.org/doi/10.1161/HYPERTENSIONAHA.124.23716#

Abstract BACKGROUND: A subset of patients with postural tachycardia syndrome (POTS) are thought to have a primary hyperadrenergic cause. We assessed clinical biomarkers to identify those that would benefit from sympatholytic therapy. METHODS: We measured sympathetic function (supine muscle...

My main issues with Garner, aside from his behaviour and patient bating, is that he was ill for barely six months. Anyone with rudimentary knowledge of post-viral illness should understand that even at six months the probability of natural recovery is high. Whether the brain retraining / BPS...

I literally forgot about this email threat Paul Garner supposedly received: https://www.livpost.co.uk/p/professor-paul-garner-was-delighted I would not put it past him to make up something like this.

Never trust a newswire, especially if it's from a biotech company.

What I want to illustrate is that MRC is not getting the proposals. I think some patients are convinced there is a conspiracy at MRC to reject any ME/CFS grant applications. The MRC grant success rate is approximately 20%. So statistically we need five proposals to get one funded. The number of...

I don't think these figures are widely made available, apart from when funders are asked to provide a figure. It takes someone crawling through research awards totting up the total amount to arrive at a figure. Interestingly, this piece of work has revealed that the figures quoted by the MRC for...

Not that I'm aware of because usually only data on funded grants are publically available. One could compare funded projects and overall funding levels for any disease/illness of their choice using database searches, but, again, these records contain data about awards made. Data for MRC awards...

I agree, but we are at the point where we need a substantial — i.e., order-of-magnitude — increase in research funding £s/year, and soon. IMO this can only come from policy change at the large funders (MRC and NIHR) to attract new researchers and to establish and commit to ME/CFS research centres.

There have been numerous discussions recently regarding research funding, with particular emphasis on the MRC. We know almost nothing in this space is being funded, but the exact reasons why are unknown. One major unknown is the number ME/CFS research proposals submitted to MRC each year (and...