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ME/CFS ERISA and Individual Disability Income Long Term Disability Insurance Claims By: Barbara B. Comerford, Esq.* The start and end of this focuses on the US system. But the centre bit "Basic considerations for the ME/CFS claimant when filing a long term disability insurance claim" is useful...

There was this comment at the end of June: I'm not sure how many people noticed it but I did highlight it in a few places at the time e.g.

"7 Challenging Daily Decisions When You Live With Chronic Illness" https://themighty.com/topic/chronic-illness/challenging-daily-decisions-with-chronic-illness/ Here are the 7 headings. The article itself expands on these 1. Deciding if you’re going to take a shower. 2. Deciding where to spend...

Also "This Social Security Ruling clarifies our policy on how we develop evidence to establish that a person has a medically determinable impairment (MDI) of #CFS and how we evaluate this impairment in disability claims and continuing disability reviews under titles II and XVI the Social...

Social Security Administration: Providing Medical Evidence for Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) This 3-page official document is from the US but could be useful for people applying for disability payments in other countries also...

It can be useful to get people who are not doctors to write reports about how an illness or disability has affected somebody when applying for disability payments in lots of countries. This document is from the US but the questions could give ideas about areas people in other countries could...

I put it aside recently to read. I didn’t keep a record of the source but think now it is was from your mailing list for caregivers. :thumbup:

https://www.uptodate.com/contents/patient-perspective-myalgic-encephalomyelitis-chronic-fatigue-syndrome Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome Outline INTRODUCTION BACKGROUND MY INITIAL SYMPTOMS Fatigue Muscle pain Poor exercise tolerance Headaches and...

Information leaflet on ME/CFS and children/young people either for patients or for doctors? I'm involved in organising a mail-out to GPs. Most of the material has been selected. I was thinking it would be good to have a specific item on children/young people to remind the doctors that...

I just checked: there is also an extension for Firefox. They are also working on an update for Safari.

I have just gotten around to reading this and found it very good. Just to nit-pick a bit: The PACE Trial was approved for funding in May 2003. It was well underway by the time the NICE guidelines were published in August 2007. So I wouldn’t be inclined to make this point.

You can get a PubPeer extension for Chrome which highlights when there are responses on PubPeer. See the images attached. I have no idea how many people have it.

PubMed Commons was a great resource for posting such comments. Also comments were prominent as they were on the PubMed website. I spent quite a bit of time over an extended period posting over 100 of my e-letters only for the project to be scrapped after a few years as not enough were posted...

I just went to look for the PubPeer link where people can post post publication comments and found this one by Peter White (a different Peter White to the one who was lead author of the anomalies paper). It starts: The following points were submitted in a short Rapid Response but not...

I just found this one by Peter White (a different Peter White to the one who was lead author of the anomalies paper). It starts: The following points were submitted in a short Rapid Response but not published. The JNNP has stated that they took-down Rapid Reponses because of ‘inappropriate...

With 12,900 odd followers I’ve quite a big following and have shared: I saw last week the @mecfsnews account also linked to the thread. The more, the merrier

@rvallee has now posted his e-letter here https://www.s4me.info/threads/no-discussion-e-letters-submitted-to-jnnp-replying-to-white-et-al-anomalies-in-the-review-process-interpretation-of-the-evidence-in-the-nice.34704/#post-489350 which disappointingly has not been posted by the JNNP on their...

This opportunity is still available. From @MassMECFS e-newsletter Join the All of Us Research Program at NIH The NIH is enrolling 1 million people in the U.S. in its All of Us Research Program aimed at building one of the most diverse health databases ever. This database will be used by...

“In this cool dark room, shielded from the world I think of those who have endured the ultimate tests in life, war, famine, homelessness, natural disasters, and like them I cling to one thing, hope. Hope for a cure, if not for me, for all of my brothers and sisters who suffer with ME, hope that...

“I'm Katie, I’m 18 and living with Very Severe ME. I live my life in one room, always in my bed. Not leaving it for months at a time. Everything, literally everything, happens from here.” “It’s heart-breaking when the people we trust don't trust us, that we are doing our best and know what we...