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So sorry for the way you are treated @Arnie Pye. I do think the fact that it is so visible has helped me. Even before it was so obvious from the outside, the X-rays showed it was a mess, so doctors have generally been understanding. Even those lacking any empathy, have acknowledged that it...

My spinal abnormality is congenital rather than genetic, and the GP and pain consultant do take it seriously. After a significant worsening about 4 or 5 years ago, the consultant prescribed low dose opiate patches which have been pretty life-changing. I did a pain management course 20+ yrs ago...

Well, they don't seem to think that new NICE GDL will change their approach to people with ME. Though the above ad appears to be for a bank, rather than permanent post. Anyway there are loads of other MUS people whose illness beliefs need changing.

The phrase "Life changing illness" can be useful. (It, or similar, such as life-altering injuries is used in the news.) Maybe alongside X can only do 30% of what she used to. I explained to a friend, that if my daughter wrote notes on some A-level Geography one day, the next day she could not...

I thought the webinar came across really well. Very positive about involvement with Solve.

Wonder if this is the Dr Jamie Leverett involved in the above: https://leveret-mindfulness.business.site/#posts

Panel list and declaration of interest from Long Covid Guideline: https://www.nice.org.uk/guidance/ng188/documents/register-of-interests

Can't see a list of guideline Committee, but the register of interests is available: https://www.nice.org.uk/guidance/ng188/documents/register-of-interests Includes Trudie Chalder and other familiar names.

A young clinical psychologist at UCL, which generally matches Bath for level of appalling tretment of youngsters with ME and their families. This training day was held in Nov 2018 and features her. https://madeinheene.hee.nhs.uk/Portals/16/school of paediatrics/CFS course timetable november 2018...

Violins on the Titanic springs to mind.

Interesting to see low expression of interferon receptor. Prof Holgate's team in S'hampton had good results using inhaled interferon to reduce length and severity of illness. They had developed it to help those with severe asthma/COPD, originally. He mentioned it in his talk.

Hi @Medfeb any useful info/sections worth watching?

I think this is to the Dept of Health as NICE have continually ignored requests to add warnings "We call on the Department of Health to make a similar caution public now in order to help to safeguard patients in England."

@Joan Crawford @PhysiosforME

Thanks Andy, I did have time as back too naff to concentrate much. It is based on views and comments of 3 people with ME who volunteer with Astriid, and some of their tips and advice. Quite watchable, but probably not that relevant informative for majority of people here.

Intereting about the Dubbo studies @Hutan. My daughter's viral labyrinthitis was quite mild compared with many I know. My sister was unable to even keep water down due to the nausea, so her husband had to call out the GP (It was New Year's day). Others I know have longstanding...

Both paediatric and adult "CFS Clinics at Liverpool" are regularly reported to be dreadful. Both their lead clinicians Dr Theo Anbu and Dr Michael Beadsworth are on the NICE GDL team atm. The name Peter Fisher sounds familiar. Did another PhD student of his recently produce another pointless...

The psychs and their supporters will be fighting this, as hard as they can, to retain their careers and income streams. My thoughts at the moment is that collaborating where we can, is the current best approach. For example with DecodeME and the PSP and "networking", so that we find people who...

Split from this thread: Exercise Intolerance in Cystic Fibrosis Importance of Skeletal Muscle, 2020, Harris et al Use of sildenafil (Viagra) to alter fatigue, functional status and impaired cerebral blood flow in patients with CFS...

Thanks @Andy and @Hutan especially