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Love is always the answer, sigh....

You have done well Trish. The simple fact is that questionnaires which look at emotion, anxiety and depression were never designed to be used with a physically ill population. In essence, these questionnaires are comparing the responses to an imagined norm of emotional health. When they are...

Maybe the emotional regions are activated by the embarrassment of having your arms wave about randomly in public so everyone turns to look at you. Not to mention anger that they say it is functional! Then there is the humour of the situation when little kids wave back :)

Sorry, this was typos and missed bits so it sounds scornful of people who feel ME and CFS are the same. We have had that discussion often and this was not meant to be part of it. Been crashed but not enough of an excuse if I upset or offended anyone. I was trying to say that biopsychosocial...

This is the reason I do not think that longcovid is the same as ME, though you call it CFS I suppose. It can take up to 2 years to recover from different types of infections especially EBV and flu then you have recovery from any damage caused by covid. I was not right for about 5 months after a...

The myalgia in ME was because of the, at times, excruciating pain. It feels like acid burning in your blood. In the RF epidemic they noted that patients hit the roof when they were touched. Before CFS I had not heard of patients without a lot of pain though they could have existed.

MS has its share, not so many, obviously, but some are making a good living from it. Because there are so few, MS patients are not as wary as us.

They kept finding interesting things in ME studies but there is never any money to do larger trials.

"The concept that fatigue could be a disease entity in itself and not just a symptom of pathological/clinical conditions gained traction after acceptance of ME/CFS" Fatigue is just a symptom of a pathological/clinical condition in ME too. It was psychologists who dropped all the other symptoms...

I am very interested in this as I have not heard about it in ME very much. Particularly as a teenager I would have blank episodes which seemed like a badly cut film. My friends said I would just walk away. Not a problem now but I never get so exhausted nowadays. When my children were small I...

I remember times I have forgotten important things because they have been traumatic and we are evolved to remember such incidents. Coming home to find the front door unlocked means I always check twice so this evolutionary adaption has served a useful function. The brain is complicated so why...

A researcher into ciguatera poisoning at the University of Hawaii became interested in ME. Most of the work was done before I had internet access so I can't remember much about it and he died so his research was never followed up. He found something he called ciguatera (?) factor in people with...

It is fair to say that the outbreak at Tahoe - and outbreak is the correct term as it spread through the community - is a mystery disease because the microbe was never discovered despite the CDC being sent to find out what was happening. Instead they ignored it and took the opportunity to push...

CFIDS came into being because Nancy Klimas had a clinic in San Francisco where she treated AIDS patients. When HIV was discovered to be the cause of AIDS she found that many of her patients were HIV -ve. They were then reclassified as CFS but felt they still had many of the same symptoms as AIDS...

I have said before that sexual abuse is not a specific abuse, it can range from name calling to serious physical attack with suffocation. In fact all abuse has a wide range of seriousness. When talking about preventing abuse in children it is valid to lump it all together but medical...

This statement is very strange. From tweets quoting the definitions of disability it is to hard see why it should not be classed as one. I could understand if they said you have to have had it for a certain length of time but to dismiss it altogether seems mistaken and could have profound...

This misses the point, it is a look backwards whereas she is writing as someone involved at the time. In Incline Village at Lake Tahoe there was an outbreak of an unknown infection which started among teenagers at a school but then spread out to teachers then the wider community. The local...

These people forget that we stay ill for decades. In my life I have had times of profound grief and overwhelming joy; I have been stressed at times and been relaxed and happy at others. Through all this my ME has been affected only by how much I have had to do, with it being the same sitting in...

This is fair enough BUT any stopping of testing must be along the lines of "We do not know what is causing your illness because of the inadequacy of our present knowledge. There may come a time when we will be able to track down what is happening and treat you but until then we will support you...

Colchicine is a mutagenic. When I used it in a science project it had to be in a fume cabinet so there is no way I am taking it for my ME without very, very strong evidence that it has a beneficial effect beyond patient report (questionnaires?)