Search results

Mention of Long Covid and ME brief but good. Basically saying people with ME have been neglected. Long Covid hs shown that a virus can lead to long-term illness, so hopefully LC research will help PwME

This is such good news.

Maybe rest is their version of convalescence, to fit in with their soundbite?

I doubt that there will be a rush of GPs keen to pursue this training.

Interesting research article from Berkeley Uni https://publichealth.berkeley.edu/covid-19/can-hepatitis-c-drugs-help-remdesivir-fight-covid-19/ Uses 3 antivirals together, still at in vitro stage. About to try them on mice.

I don't know much about polio. Are the problems following polio more systemic than problems with particular muscles? For example, walking with a limp - this was what my godmother who had had polio as a child, was left wth. She was otherwise fit, healthy and active.

This is very useful @Simbindi. My friend, with ME was given Zero points and assessed as being able to make complex budgeting decisions, based on the question. If you buy a loaf of bread costing 75p and hand over £1, how much change would you get? She asked if she could write it down, allowed...

Wasn't Wingassen involved with the dodgy CBT for IBS paper?

Are you on a Facebook Group for Parents of children with ME? They may have suggestions of suitable doctors to see. Some adult docs will see youngsters from 16 yrs. Hope you get some helpful advice soon. Training for dietitians is fairly narrow, unfortunately.

Grandson of a friend had dreadful/longlasting headaches/migraines from about 11-18 and had been diagnosed with ME. (Bath) He then saw a cardiologist who diagnosed POTS and appropriate meds and headed off to Uni, where he was able to play sports again and study. Now in second year.

@Gecko, Has MEAction linked to these?

Another grant, how does she get all this £ ? Esther Crawley: Sanofi: Exploring the prevalence of Pompe’s disease in patients diagnosed with CFS/ME: £550,000 "What is Pompe disease? Pompe disease is a genetic disorder in which complex sugar called glycogen builds up in the body’s cells. The...

There is a list of CFS research projects at Bath below: https://www.bristol.ac.uk/academic-child-health/research/research/cfsme/

September 2019 National Institute for Health Research (NIHR) Research for Patient Benefit (RfPB) Programme: £149,000. Measuring Health in Children with CFS/ME: Refinement, application and evaluation of new PROM (PEACH) in routine practice. Esther Crawley and Roxanne Parslow. February 2020-2022...

Esther Crawley's lot still keen on LP. From https://www.bristol.ac.uk/academic-child-health/grants/ September 2020 Anderson E. RCF - ReCLAME Study - Researching CBT and the Lightning Process for Adolescents with ME/CFS - Preparation of an RfPB Grant Application. Bath Royal United...

Stevenson Terence PI. Crawley Esther Co-A. Non-hospitalised Children & young people (CYP) with Long Covid (The CLoCk Study). £1.35 million

Hmm.....

I also believe that people with ME consistently downplay their level of disability. When I was helping a friend with her PIP application, I had to keep asking/reminding her whether she could do the activities they ask about. She was so used to adapting her ways, to manage as much as she could...

One of the first things I did when my daughter became ill was to find accounts of people who had recovered. There seemed to be a huge variety of stories and nothing obvious to folllow that I could match with biomedical understanding. I remember Ron Davis, several years ago also asking for...

Only a couple of months to go for NICE now :)