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I was diagnosed as moderate to begin with. Crippling pain and cognitive issues along with sudden loss of power to a limb were among early symptoms. The initial picture was complicated by ongoing mildish anaemia, a lot of relatively mild allergies and poorly managed hypothyroidism. So a lot of...

I think any article that discusses ME and activity, let alone exercise, should first describe and give at least a basic outline of different severity levels. If I were undertaking such a thing I think I would break it into sections along the lines of - 1. Definition of ME and various levels...

It looks like a fluff piece and come across as having been written by people who don't really understand ME, quite frankly. It's a mishmash article that acknowledges there is a milder and more severe end and, instead of discussing one level or another, gives a misleading impression of a...

One of the issues as I see it is psychological interventions and those that deliver them have become (maybe they always were) an industry. Sometimes that leads to them behaving inappropriately and putting their business or potential cost savings ahead of client well being. Twice now, I have...

I sometimes feel like my body is my prison - I am rewarded for "good behaviour" by a lessening of symptoms, just enough to make me think trying something small is possible. Then when I do try something minute, something I am punished by days or weeks in isolation, locked in by exacerbated...

I tend you wear yoga gear. I prefer the ones that look looser than leggings and I find them easier to pull on. They are comfortable enough that I can go and have a nap without changing, if I need to sit on the floor (to prevent falling any further) then I can comfortably do that too. They...

Re keeping hair and self clean while in bed. I recently came across these no rinse products - The no rinse shampoo cap - they can also be bought in packs of 24 https://www.completecareshop.co.uk/personal-care/aids-for-hair-washing/no-rinse-shampoo-cap The same place do a no rinse shampoo &...

Garner still has the opportunity to put things right if he uses a bit of sense and objectivity. I can appreciate the thoughts of having ME is very scary. I am sorry to hear these unsolicited emails are seen as being harmful. I think he could do with being reminded that for some, those well...

Oh the irony..... Of how someone who now believes themselves to be recovered (& I genuinely hope for his sake he has & it's not just a remission) can freely use such imagery without being accused of threatening anyone whereas those of us stilled mired in ill health have to choose our words far...

I have been pondering the quote "I feel that I have looked down the barrel of the ME/CFS gun and disarmed it". When someone becomes ill with covid, then long covid or whatever virus followed by PVFS or ME, we have no way of knowing what the outcome will be. It is devastating as one has to...

I used to love swimming and went at least twice if not three times a week before getting sick. Even in the early stages, when my ME was at It's mildest, swimming completely wiped me out. Getting out of the pool my legs woukd barely hold me up and I was left feeling so weak that dressing was a...

I think, we'll have to. :hug: Bottom line - it can be a slick as you like but as a severe ME patient who has had people deliberately try to use questionnaires to cause me harm - & I'm not exaggerating - denial of benefits, deliberately misinterpreting one thing to mean another to squeeze a...

I'm afraid I disagree. I think the problem with questionnaires written by people who are experienced in writing questionnaires are that they aren't necessarily experienced in ME and in writing questionnaires that are ME friendly and designed to elicit the most accurate information with the...

I think those are probably fair comments when writing questionnaires for normal, healthy individuals @arewenearlythereyet. For example Often with ME questionnaires that I look at and ditch, either the earlier question is unclear or compound and or I misinterpret it. Then I see the next...

i think I'll out all the striped deckchairs together and separate from the solid colour ones...... Hmmmm perhaps it would be better to do them by colours. Iceberg? Is that a shade of blue?

I would rather see a questionnaire with more straightforward questions than one with fewer compound or complex questions. Initially it might look like extra effort to fill in but, for those with bad cognitive problems, compound questions can be easily misinterpreted. Another pet hate with...

Completely agree. I would like to see questionnaires assess their own level of acceptability. Currently, if I attempt to fill a questionnaire and wade through only to realize that it simply cannot capture ME accurately because the questions are inappropriate, then I just don't save it and...

This happens to me too. It's quite frustrating. If I'm asked a question about rating a symptom like pain on a "good" or not as bad as it could be day I will probably answer more accurately than on a bad day. The problem is I'm so used to being clobbered by so.many symptoms at once I'm...

I don't know if it's the same thing but I had a lot of problems with skin rashes at one point. Typically it would start either on the soles of my feet or palms of my hands but not always. Initially it was very, very itchy and there was just a slightly raised red patch on my skin. Then it...

Odd. The DOI link isn't working now. Edit -Link to journal at the very top does though