I have switched of the emergency warning facility on my iPhone (I hope), with the intention of switching it back on next week, if I can find the relevant settings again.
Posts moved from 'Investigation of Remissions' thread.
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This is something we have discussed in other contexts, such as people with gradual onset. The pedantic answer is that generally an ME/CFS [diagnosis] requires a 50% loss of function, so such pre or post states are not...
Given the high rates of misdiagnosis (potentially as high as 40% both false positives and false negatives) we need a way to confirm the original ME/CFS diagnosis and a clear description of pre remission symptoms to know which of the various diagnostic criteria the person originally met.
Of...
I was impressed by my sister in law, who, having witnessed my ME and ME in the children of several friends, descended on her daughter’s university when she developed glandular fever (mono) and gave the university no choice but to give her a year out. My niece went home for some months and then...
Just to add to what was said by others about the BPS approach to ME/CFS.
The bio psychosocial model in theory states the truism that every condition has potentially biological psychological and social components that need to be considered for fully effective treatment/management. However its...
What I was hinting at above is the possibility that, though we have no treatments, we can create the best opportunity for spontaneous recovery, though there is no guarantee that any such recovery will occur, nor that if does occur it will be any where near full recovery, nor that instead we see...
I believe, without any objective evidence, that, if I can sufficiently reduce my activity, avoid PEM that triggers long term worsening, and avoid anything else that will worsen my health, such as infections, my ME tends to spontaneously improve, but that over the last thirty years any such...
[Cross posted with @Kitty ]
Sorry I worded it badly. I meant there are assumptions in saying it was ‘triggered by’ though for me given there was no clear distinction between the end of my glandular fever (mono) and the start of my ME/CFS (though obviously not diagnosed until later) means I...
My initial onset was concurrent with glandular fever (an acute Epstein Barr infection with the virus confirmed). I believed I had recovered after some four years, but then my first significant relapse was concurrent with an acute seasonal flue infection (virus not confirmed).
In my mind I see...
Given people with ME/CFS often respond badly to medication, anyone taking a new drug should be able to investigate what they might be taking if allocated to the treatment arm.
Obviously this pre knowledge shouldn't be a problem for those already enrolled in the trial as long as it is...
Pemgarda seems to have been developed initially for use with the immunocompromised where the ordinary Covid vaccine is not appropriate, hence the phrase ‘clinically vulnerable, though I am not sure what is intended by ‘emergency situations’. Could it it just relate to the pandemic situation, or...
My heart sank at the first line: ‘This book assembles the acquired wisdom of experienced paediatricians and other clinicians’ ie the prejudices and preconceptions of the great and the good.
Sorry not read the article, but presumably this includes those with identifiable physiological damage, such as lung damage, who would be more frequent in the patients hospitalised in the acute phase, who will not resolve so easily, as well as those with post viral fatigue that might be expected...
I also found the Citizen’s Advice Bureau very helpful. They also came to my house and filled in the PIP form for me. Mind I have heard other people say they did not help as much in other areas. It may be if you are in a rural area they are more flexible.
Although very stressful there is...
In one sense, prior to diagnosis, all medical consultations are for symptoms not yet explained. However, ‘MUPS’ is a specific diagnosis the validity of which quite rightly requires serious examination, not least to establish whether or not it has an objective reality beyond the minds of some...
The article throws out lots of ideas around over diagnosis without fully distinguishing between them:
Misdiagnosis, where false positives are a form of over diagnosis
Over testing, where testing provides no additional guide to further useful action
Over testing because of a doctors fear of...
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