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Personally I worry that we risk wasting too much advocacy effort by endless debates on the name of our condition. Until we understand the aetiology better we will not be able to achieve a widely accepted label. It seems to me that ME/CFS is a pragmatic compromise until we have the evidence to...

Lawyers will be able to be more informative, but I suspect that the coroner has a limited number of choices, as well as requiring a high evidence bar for anything other than natural causes. On the available evidence, we may suspect that had she been given alternative feeding in at timely...

How do we get people to understand this key point, when so many of even those that we see as positive advocates for ME/CFS don’t get this? How do we progress when, not only our ‘enemies’, the BPS crew such as White and Wesley, but also pro biomedical illness advocates, our ‘friends’, persist in...

Would it be worth replying, asking if they are addressing all our complaints, given they refer to ‘complaint’ in the singular, or if not which are they disregarding and why?

Thank you.

(In the UK). I had already booked in with my GP for the flue jab, but had thought I wasn’t eligible for the Covid jab. However I got an email today that said anyone over 65 is now eligible for it (I am 65). Have booked into a vaccination centre for two time, but don’t know which type it will be.

Thank you @Trish.

Do we know when the ‘writing group’ submitted their draft ‘protocol’ to Cochrane in preparation for consultation? Given the writing group were relatively punctual is the subsequent inaction a deliberate choice by Cochrane or the failure of the IAG for whatever reasons, be it Cochrane’s...

Given Hilda’s personal Blog page on this is obviously failing as a meaningful channel of communication, with no indication that information there is passed to Cochrane or the IAG, this reinforces others’ comments that we need to address the issue with Cochrane’s funding sources, relevant...

It is not uncommon for me in PEM to have both nausea and hunger pangs. I both want to eat and don’t want to eat at the same time. Definitely not fun. I am never sure at such times if it is normal hunger because I am likely to be struggling to prepare or get any food or if it is PEM related as...

I don’t know if it is still the case, but in Sheffield consultant referrals for ME/CFS were sent to ID. However when I was seen by them some thirty years ago and some 15 years ago they just diagnosed and handed me back to the GP without any specific recommendations.

Welcome @Karen Hargrave and thank you for your advocacy work and for commenting here.

Yes. Ideally people would be supported to an appropriate level to live with their ME as well as they could, such that any request for assisted dying would be based on the inherent consequences of the disease, not on benefit policies. However from the individual’s view point any decisions are...

We have the example of Canada that illustrates some of the complexities: in Canada generally people with ME are unable to claim appropriate benefits because the disabling effects of ME are not recognised, but the lack of access to appropriate financial support to maintain a basic quality of life...

Was the issue that ‘this would include people within the condition, if diagnosed on the basis of these questionnaire responses, that do not have ME/CFS as defined by NICE’ raised with the MEA? It seems to me this ought to be a big red flag for the MEA that they are working with people and a...

A relative was very ill over a couple of years. The doctors thought he had some sort of infection in his leg but it did not respond to antibiotics. He was confused and needed significant levels of nursing care. His daughter had to make a decision for him about amputating the leg which was very...

Why do so many researchers/clinicians feel obliged to overstate what we currently know? Why can’t they just say we don’t know the aetiology, but feel that x, y and z are currently seen as the most likely culprits, either individually or in combination?

I agree I too have generally been over optimistic in relation to my ME. I have always assumed any deterioration is transient and that any improvement will be permanent. Over the 30 years of relapses and remissions, though each subsequent relapse has been worse and each subsequent remission...

I think the problem is that the UK specialist clinics and BACME genuinely believe they are helping people and that the false positivity of curative rehab is so engrained in the UK clinicians that they are unable to step back and be objective. As said elsewhere there are lots of reasons that...

I have forgotten my statistics, but if someone said that a family where everyone was either four foot tall or eight foot tall was statistically indistinguishable from a family where everyone was six foot tall is not doing the right statistics.