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I misread this as ghastly researcher. I was like, “Yus! Ghastly researchers for ME! That’ll scare ‘em!” :emoji_skull::emoji_microscope:

@Ravn thanks for the link. Just completed my submission. Since system-wide changes were particularly sought I focused a lot on more direct accountability at all lvls of the system to the end consumer (as contrasted to the brush off we receive from politicians currently). Better systems for...

I think, for the sake of honesty, it would have to alter how it is used.

An amazing read! This is tragic =(

Thanks @Ravn that confirms a suspicion of mine. My GP diagnosed me by what he ruled out (though he has actively encouraged me to consult with Dr Vallings) so it would come as no surprise many are misdiagnosed. I basically just confirmed the diagnosis through research and digging and comparing...

It comes across as quite mature and thoughtful the way Jen has announced her news. I imagine 100s of alternative ways of announcing the news which could have been much more damaging to the M.E. community. Her experience could be twisted by the unscrupulous or tunnel visioned. But with a...

I have a well-meaning friend who was helped by The Switch. Like great for her but I’m left thinking, “Honey, your dr might have called it CFS but really all that means is you have no idea because now you think you know what ME/CFS is and that it’s easily cured.” But of course I won’t say...

Generally speaking politicians will only start doing something meaningful when they perceive it to be of importance to the wider public. Or if they see the impact of the illness close up and personal with someone they love. Which is one reason why advocating for public awareness is helpful.

This biobank initiative is so flippen cool! :thumbup:

@Alvin Great advice. I was considering attaching a separate page. This is after all the only place in the application for me to describe my illness. Hmm I also think it might be wise to take a double appointment for my dr to fill out his section and bring with me a thorough list of symptoms and...

The space given to describe the condition :emoji_joy::emoji_joy::emoji_joy:

Should I be troubled that this made me feel hungry? Mmmm guacamole and salsa on chips

@Daisybell if you have a dr who says you are too sick to work I’m pretty sure they are legally obliged to grant a Sickness Benefit as long as you aren’t disqualified for other reasons (ie your citizenship status, the millions of dollars of assets you have, a sugar daddy husband etc). One of the...

Hmm there might not be legal aide but you’ve made me realise there might be... umm wait for it... my brain might, or might not remember the term... advocate? advisor? not the word I was looking for but close enough. And my local support organisation might have someone or be willing to develop...

I have heard about the dread of the PIP :(

My very supportive dr has suggested perhaps applying for the Supported Living Payment (WINZ benefit type that appears to cover 2 years instead of the 3 months of the Sickness Benefit). My yearly review case worker at WINZ also encouraged me to apply. Two or three months later I finally got to a...

Yay! I’m going to look at these suggestions too. I feel like I am overlooking a number of symptoms because I’m being hit over the head by hard-to-ignore ones. Or I erroneously lump symptoms together (ie as brain fatigue or exhaustion) when it would be more helpful to separate them. If anyone has...

I’m posting this on my FB feed tomorrow. This month I’m a FB warrior for ME/CFS awareness hehe! I’m so grateful for the work he is doing. How tragic our gain of this brilliant mind and team has come at such a personal cost to his son and family.

@Hutan I have always had a thing about not allowing my shed hair to disappear down the drain (sympathy for flat mates/family who would otherwise have to clear out my shed hair eeew). And now my hair bothers me daily and forces me to deal with it—as much as I would rather just let it become a...

I list unusually high amount of hair moulting as a potential symptom. It’s too hard for me to be absolutely sure about the relative amounts vs normal hair loss. It seems to me subjectively that my first round of hair loss occurred not long after developing the syndrome. Then it seemed to...