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I notice the difference in speed and gait between walking to somewhere from the car park (usually not more than couple of hundred metres)doing the activity for a couple of hours and walking back to the car. Eg football match we park on the stadium car park and it is only a short distance I...

Yes irritability.

Spend a week in my shoes mate then come back and let me know what you learned about just how intrinsically motivated you had to be to do basic daily living tasks let alone doing anything outside home :rolleyes:

:wtf::wtf::wtf::wtf::wtf:

MEAssociation home page Announcement of ME Connected - a community they have launched on discord https://meassociation.org.uk/ Not posted as a recommendation but for information. I don’t use discord and haven’t gone into this community so don’t know anything other than what is in the announcement.

No way I would take the risk of climbing stairs backwards. It is one of the most challenging physical activities I do and I have to hold on with both hands at all times when going up face forward. I previously had a fall down just a couple of steps and sprained my ankle on one side and foot on...

Ironically today in the Guardian emphasis on misinformation about cancer https://www.theguardian.com/society/2025/jun/02/cancer-patients-misinformation-online-coffee-enemas-raw-juice-diets-

Yes common nowadays- linked with obesity and one of the reasons given for slow & steady weight loss being preferable is that for anyone who is on a diet where they lose weight rapidly there is higher risk of gallstones

No doubt they would also come up with some twisted explanation for me continuing to go to football when I get PEM every time win or lose

Yes to positive events having just as much of an impact as negative ones. I’d use going to football matches as an interesting example where if my team plays well and wins despite having a much more enjoyable afternoon my PEM will definitely be worse than when they don’t do well.

Unless you seek information you’ll never have heard of PEM probably won’t have a diagnosis either

Advocacy and campaigning is about doing all of these things official channels, press, and protest.

Tagging @PhysiosforME in just in case they haven’t picked up on that

The responses to written questions as with replies to letters to Ministers are put together by junior officials and it has always been the practice that standard paragraphs are used and then the response should be tailored to the question. written questions are routine policy work. to get...

@PhysiosforME

Been on Wegovy for 6 months and I do have 10% less weight to carry so obviously I’m using a bit less energy moving around. but it hasn’t had any noticeable impact on my pain, sleep, orthostatic, cognitive symptoms. To give an example my rule is to not go back upstairs during the day as it...

Yep same

When im involved in occasional social activities with friends sometimes photos get taken. At the time Im enjoying myself and absolutely not focusing on my ME/CFS symptoms. Nevertheless I regularly find that the photo shows a group of people smiling and me with something of a frown. This isn’t...

Shh don’t tempt fate :whistle:

Sore and or croaky throat is one of the symptoms I got a lot when undiagnosed for all those years - thinking it was laryngitis or part of flu type bug. Now it is less frequent but a good indication of how bad my symptoms are. Today I have done nothing other than have a telephone appointment...