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People with ME/CFS have waited far too long for meaningful action. In May, all 72 Lib Dem MPs wrote to demand urgent funding & a proper plan from the Government. The response was full of warm words but no real commitments. You can read more about it here...

I don’t know why our charities aren’t leading a campaign against the position of leaving it up to ICBs to fund ME/CFS services according to their individual priorities (big reveal of the day, when left to their own devices most ICBs regard MECFS and long Covid as low priority and are seemingly...

I think MEA are completely failing the long-term and harmed m,e community if they allow or encourage m.e services to be just lumped in with the “here’s an app”, some information material and some remote service provision that the Leeds groups & elaros have planned for newly ill long covid, with...

When I looked up a few weeks ago there aren’t many illnesses where a young or old person is too weak to leave the house on a long term basis, so i'm not surprised that the bbc found a CFS patient, even if it hasn't decided whether it's in our heads or not.

She probably doesn't know about the DHSC delivery plan. "Start" talk terrifies me when I've lost 20 years to being in bed, the 2002 chief medical officers report that Dr Charles Shepherd spent 4 years contributing to was Supposed to fix Years of mistreatment and neglect and set up a program of...

Most people with m.e have clear psychological/ psychiatrist assessment & a host of physical symptoms, such as muscle pain, sore throats,, orthosatatuc intolerance, morphine requiring pain , some that are objective and not explained by deconditioning , such as failure to perform of 2 day testing...

I don’t know if this paper has been discussed anywhere in relation to NIH Intramural Study on ME/CFS , or if this has any importance, but in 2020 John Hopkins research was studying effort preference and fatigue...

It’s geared to long covid then? Are those topics copied of MEA sheets of their own material?. Cognitive dysfunction in m.e cannot be rehabilitated in the usual sense. It either gets worse by itself or improves by itself as you generally improve. You are not bringing about ability to read more...

produce a survey (open to all who have severe ME) a few months before the panel to ensure we cover the top topics Has anyone seen this survey “for all who have severe ME. supposed To take place before the meeting panel on severe ME in August please?

it's looking increasingly likely that the DHSC delivery plan release will be timed to have its questionable "delivery" out amidst what will doubtless be a big organised news story around DecodeME. It , to me, seems also that the DHSC delivery plan became a talking shop tool - whether Sajid...

The app developers are seeking input from people connected to Long Covid, ME/CFS Fibromyalgia and POTS. . So , it looks like they've finally clocked that these illnesses account for the a lot of working age out of work stats. I've been posting this under everything the government have been...

It's background about elaros who afaiu are behind the app. If it's of no interest or irrelevant please delete

https://www.elaros.com/evidence/

I don’t know if this was seen? ELAROS Hosts Webinar on Digitally Supporting ME/CFS and Long COVID Services - C19-YRS https://c19-yrs.com/elaros-hosts-webinar-on-digitally-supporting-me-cfs-and-long-covid-services/ On Wednesday, 5th February, ELAROS hosted a webinar on Digitally Supporting...

MEA & Elaros joint event https://www.eventbrite.co.uk/e/integrating-mecfs-and-long-covid-specialist-services-tickets-1387971232319?aff=ebdsshother&utm_share_source=listing_android

One of the advisory board Is Helen Dawes https://experts.exeter.ac.uk/38045-helen-dawes She created report based on MEAs “count ME in” project. Earlier diagnosis and better care needed for ME and Long COVID patients, report finds - News...

When The ME association surveyed members https://meassociation.org.uk/wp-content/uploads/MEA-Management-Survey-2010.pdf about what type of care they wanted and who to lead it, an OT got low scores and not in the top 3 for both leading and involvement, whatever the nhs wants to parcel us off with.

MEA have never shared or promoted any of the patient campaigns on research funding. However they feel they must share this, in the month we expect the DHSC to refuse funding for research or better services, a DHSC-funded app substitute& the cheapest form of OT led management - I’m thinking of...

In terms of ministers, it's pretty much about numbers vs substance of argument isn't it? . So the hours over weeks arguing a case in a long letter have been pointless but a campaign, which our main charities never lead, to inundate with citizens concern would be worthwhile because it would...

thank you. Imo it does show that written questions or written letters to ministers or even to MPs are a waste of time then aren’t they? And we should be using much more varied ways of trying to lobby and campaign which charities have not led in any way. Every attempt to apply more public...