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For many people the cost of a prescription puts them off. Also those living on very low incomes may not have the money to buy a 3 or 12 month prepayment certificate (PPC). These save money if you need regular prescriptions: "There are 2 PPC options: a 3-month PPC costs £32.05 and will save you...

I tyhink David Strain isn interested in Ampligen

I have heard that the Liverpool CYP service is pretty much BPS. There were only 5 responses from there in the MEAction UK report for NICE gdl development. https://www.meaction.net/wp-content/uploads/2019/10/Your-experience-of-ME-services-Survey-report-by-MEAction-UK.pdf P52 one response...

Also on their Facebook page. (21 hrs ago at 11am) ETA: Link on here goes to survey

The S4ME Committee have now signed this letter.

His comments in a letter to the BMJ in 2020 on the LC NICE GDL include some good comments: "The guidance mentions screening blood tests (such as full blood count; clotting profile; renal, liver, and thyroid functions; and C reactive protein) and tests of both cardiac and lung function to capture...

I've asked on a parents' site if anyone has seen Crawley recently, linking to the acknowledgement in the BMJ paper. Was shocked, but not terribly surprised that currently, several families are having their youngsters diagnosed as FND!!!

Yes and the leaflets that are linked on the clinic website, #204 seem to be unchanged

@Old Monkey are you on the Facebook Group: Parents of children with ME/CFS support Group? https://www.facebook.com/groups/295809457153118 There are many stories on there re UCLH, Bath and others. TYMES also has a great deal of experience of defending children from being pushed to do more...

I have heard of families being threatened with social serices if they don't do xyz. One example was a teen spending too much time on their phone! Back in 2011, when we were at GOSH, which moved to or combined with UCLH, Anna Gregorowski, told us that screen time should not be more than an hour...

Let's hope she's not one of those doctors who needs to retire at 60 for pension purposes, then after a certain period, pops up again, eg in private practice.

Wow, this could be Brilliant news, hopefully she has retired from any medical interaction with children. The Bath Clinic she runs/?used to run, now makes no mention of her, still the same old info and leaflets...

If much of ST's work has been with strokes, i presume the average age would be higher. There may also be some problems with using some if paralysed on one side.

Have been able to register, with my area of interest being medical education. I can access the webinar for £20. I'd certainly be interested in Danny Altmann's latest research. Am very familiar with Dr Gall and his work on POTS/orthostatic intolerance. Probably not much else is new or can't be...

I wonder if recordings will be available afterwards @PhysiosforME

I totally agree that any physical activity, not just steps, is important and good to record. Also changes in heart-rate are relevant for those with POTS/orthostatic intolerance. My daughter's heart-rate goes ridiculously high when sitting watching an exciting 6 nations rugby match on TV.

I did raise this at the end and the Physios for ME attending (Nikki Clague Baker and Karen Leslie) agreed this was important.

Some comments in the chat after Sarah talked re wearables were that other activities such as playing the piano or stroking the cat showed increases in steps. For people with ME, the former certainly could be relevant activity. Of course these types of wearables don't I assume measure cognitive...

Tempting, but probably not productive...

Posts moved from UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 Excerpts from Email re workshop tomorrow: "Clinical trial design in people with ME/CFS on 4th June 2024, 13:00 to 15:30. The workshop aims to generate research...