Search results

Note. I will keep this link handy to bring up in the ever reoccurring ME versus CFS naming arguments.

Thank you @Jonathan Edwards, it definitely gets across how much is not known, but reinforces the idea that ME/CFS is a meaningful clinical grouping though we have such a limited understanding of its aetiology. I have always been lucky to have GPs who understood how little we know, though I have...

If I remember my basic neurology: Covering one eye would not necessarily reveal if light sensitivity was lateralised, as though we have right and left visual fields lateralised in the brain both eyes feed into each: the right half of both retinas feed into the left visual cortex and the left...

It is interesting that I have the same experience. It is not that I am afraid of heights but that my body freezes. Several years ago I was at an art installation in Düsseldorf, where the Kunstgalerie was made up of two tall nineteenth century buildings joined by a three story glass atrium. The...

Use of the word ‘adequate’ reads to me that they believed full or detailed investigation was not necessary because they ‘knew’. Using the word adequate to me suggests that for research purposes this was not sufficient.

I may be being stupid, but … Is a reproducible difference in vitro being found in the presence of micro clots in the processed plasma between people with Long Covid or ME and healthy controls? If this is the case but it is looking like such micro clots are not an issue in vivo, does this mean...

I did not get round to donating until after the target had been reached, but that was my thought in still doing so.

It is an interesting question ‘is PEM and other features of ME related to something that shouldn’t be there or to something missing?’ At times it subjectively feels like one and at times the other.

I have never particularly enjoyed the taste of alcohol, and have always reacted badly to too much alcohol. The last time I over indulged was over forty years ago when I ended up vomiting for some sixteen hours such that my throat was bleeding. But I could drink moderately prior to ME without any...

I suspect I have two processes happening at the same time: a longer term cycle over 4 to 6 years, when I first developed ME, and since when I am in a major relapse, sometimes associated with a significant viral infection, I sleep a lot more, that is when what I refer to my underlying ME is...

It is unfortunate that the article is behind a paywall. I would want to know how they define functional somatic symptoms and how they establish that their subjects do not have other conditions? For example can we say be sure they have not swept up children with ME/CFS or Long Covid too. Also...

I have clear food triggers with a predictable time lapse between consumption and the headache onset. But also migraine type headaches are a symptom of my PEM. I only now get food triggered migraines if I eat something that contains the trigger foods unbeknownst to me. Also though restricting my...

Both an expert and ‘no specialist’ at the same time depending on the source and in this quote presumably saying that he places his personal experience above systematic reviews, which is presumably why he rejects the NICE ME/CFS evidence review but not the Cochrane CFS exercise review which he...

Outcome switching as per the PACE trial

To be fair, when he was in his ‘pacing is miraculous’ phase and engaging widely with the ME/CFS online community, there was a lot of enthusiasm that a member of the medical establishment seemed to get the concept of PEM and was advocating for pacing. Whether ‘hero’ is the right term or not, he...

Welcome @Friendswithme. It is good we have a range of views here and discuss things through. Though the research is limited it is generally said that only around 6% recover from ME. It is most frustrating that no one attempts to examine why these people recover when the majority don’t. I have...

Also I have previously pointed out that there is hope that gambling will result in an increase in you personal wealth, so by the Garner/Steele argument everyone with financial concerns should be out there gambling.

I am old enough to remember when it was not unusual for the medical profession to say that people with MND (ALS) shouldn’t be told their diagnosis because it would destroy any hope. False hope made no difference to the course of their condition and prevented them preparing appropriately or...

It is frustrating that we still don’t know in Long Covid whether it is best described as a single cohesive syndrome or as a mixed bag of the consequences of damage that took place during the acute phase along with ongoing disease processes triggered by the infection such as ME/CFS.

I wonder how many of us find trying to follow the injunctions of the ‘sleep police’ actually results in poorer sleep. Personally I find just rolling with the sleep patterns my ME throws at me works better than trying to fit in with perceived correct sleep patterns.