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The first four questions are basically the same question? And I’d only term it “overdoing things” because I’ve been conditioned by BSP to see it’s “overdoing”. I sometimes tend to do more than average, when I have energy and I can foresee a crash so I need to get done quickly and out of the way.

I think the boom must be our perfectionist/type A personality aka neuroticism. If we exercised without overthinking negative thoughts, we’d be fine.

I will qualify that by saying she didn’t starve or dehydrate whilst asking for food. We, of course, can see many similarities.

I suspect because she’s not seen as a similar case.

A mark of perfectionism is becoming disproportionately upset when things don’t work out or go your way. Getting upset in front of a BPS about feeling unwell and not being able to work/exercise/socialise is therefore, to them, evidence of perfectionism. As is having a life including work...

I lied in my CBT. There was no other way. What they were suggesting to me didn’t make sense. And there’s no arguing with it. Believe me, I tried picking holes in what they were suggesting. So in the end I agreed, and told them what they wanted to hear. Eventually, I ended it and walked out...

Yeah I hate the perfectionist thing. I try to do my best because experience has taught me that is what expected of me! Whether school or work, if anything is below-par you’ll get a dressing down for it. I never lived in a “show home” but I like it to be clean and neat and tidy (I’m a default...

Pinning my hopes on Decode ME

Where does it end though? They can twist any words or meaning.

Yes I was going to say, they dipped their toe in the water. Miller put on his best face, and implored people of opposing beliefs to work together against the common enemy - ME/CFS. What a lovely man. Did I say lovely man? I meant Trojan horse. Turn it away, it’s no gift. I did see a Reddit...

Yes I think symptom management is used as a term in many chronic conditions? And it establishes that the symptoms exist, if they didn’t then why would you manage them?

I agree, the “management” part isn’t great. But establishing we have symptoms which need to be mananged is good, I think. Energy is a “red herring” just like “chronic fatigue” was. What we all have, first and foremost, are symptoms. All symptoms are affected by lack of energy. Many symptoms are...

It’s going to make it really hard for people to say “have you tried…”

At the risk of going on about this, I feel like symptom management takes away the patient-blaming, and allows for discussion about what the particular symptoms are. symptom : brain fog Management strategy: keep things in their right place, ask ppl to put requests in writing/email/text so. I...

I’m going with symptom management. If I can, I’ll manage my symptoms so they don’t get out of hand. But sometimes they’re unmanageable. They never go away, and by managing them I’m herding cats but sometimes most of the cats respond when I throw them some treats.

How about a campaign where we self-advocate for access to an experienced clinician?

Has there been research on “pacing” as we understand it? and why are Gladwell’s patients getting preference in developing guidance? What if I wanted to contribute, I have to move to Bristol?

I think I’d go for wax and wane. The energy comes, the energy goes, as sure as the moon grows and shrinks in the sky, and sometimes there’s an eclipse and it dominates or disappears altogether. I’m not failing to hit the brake, the brake hits me!