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Having only just rejoined the MEA a year ago, on the basis of their funding this dreadful ‘tool kit’ and aligning with BACME I am thinking that I will resign.

This article seems to be a summary of the Miller et al opinion piece that appeared in the BMJ earlier this year., which we extensively discussed in this thread. It extols the wonders of hope, specialist personalised care and brain retraining without any meaningful evidences, and seeks to...

Interesting. Has esophageal manometry been reported on in very severe ME/CFS where there are marked feeding issues? (Aside - I now have oesophageal reflux, but it did not start until over twenty years into my ME/CFS and after I have had one or two probable TIAs, so it perhaps more likely that...

I agree with an initial focus on the very severe is important. I suspect the BPS focus on the mild and mild end of the moderate spectrum has been a big part in their getting away with mis characterisation of our condition as psychogenic.

My food issues in part have a predictable time lag. Response to gluten, as long as I am gluten free when it is ingested, has almost exactly a 24 hour delay before symptoms emerge, caffeine a six hour delay, though having said that any response to alcohol is much less consistent and with high...

It is such a horrid symptom, I tend to get it when in PEM as well as or instead of feeling nauseous. It is (to me at least) strange that ME can sometimes subjectively feel like an absence of something and then at other times feel like something poisonous or toxic is in the body. I have never...

I don’t know enough to say whether or not sufficient research has been done for us to now reject the viral persistence theory or not, however I do agree that I struggle to understand the fishing approach that involves trying out different drugs when we don’t yet understand the underlying causes...

Has any research in any condition meaningfully demonstrated that irrational hope has any medical or psychological advantage? My personal prejudice is that accurate realistic information is better than hope. My previous work experience with people with neurodegerative conditions such as MS or...

I hope the south west Long Covid services have less of a BPS bias than the ME/CFS services there seem to have, though it is not looking good.

Thank you @forestglip

I am not sure now as I had not realised there were two separate studies/threads until after I had commented. Brain fog quite foggy today. With the change in vaccine eligibility, people still had to make an active decision to have it, and there was some confusion on the ground about who was...

Not read the paper yet, but can they get beyond demonstrating an association. The abstract seems to be claiming they have proved causation which the previous studies reported definitely did not.

I am not aware of ever having had a problem with any medications. Though I have always tried to avoid taking any medications if I can. This reluctance to take prescribed medicine, may reflect a family prejudice possibly dating back to pre free health care days, when any medical involvement only...

Is the suggestion that the epidemiological variation relates to acute infections (ie glandular fever/mono) rather than to under lying levels of the EBV virus present in the in the general communities? Though my acute episode of glandular fever in my mid thirties was the illest I had ever been...

No one is denying some people recover. Though we lack good data, one study suggested some 6% of people with ME recover completely. Further anecdotally, a lot of people with ME/CFS go through phases of trying any and every intervention being marketed, so then adding on the dramatic increase in...

I had thought there was no love lost between the MEA and Colin Barton, certainly there seemed to be an ongoing social media conflict, particularly when there were concerns about MEA’s governance a year ago.

For me the issue is, were employers negligent and consequently what level of damages is appropriate. People with Long Covid unable to work need to go through the normal ill health retirement processes, but their employers need to address do they additionally need to pay damages. This would apply...

Struggling to find any references, and the reviews of autopsy studies in ME/CFS that I have so far found don’t make mention of any indications of overall reduced grey or white matter volume. I don’t usually confabulate to fill gaps in my memory, but I do sometimes get the wrong end of the stick...

I knew when I wrote this that some one would ask about references. Unfortunately my memory for names and dates is pretty non existent. I have started searching, but so far have only come across the various inconsistent scan studies. Am hoping some one else has better memories and record keeping...

But he is getting air time and column inches. He is part of a grouping that has the ears of policy makers and who are saying what many service providers are wanting to hear. Change is happening but it is be no means clear that inappropriate psychological and exercise based interventions will not...