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Now as I vary between moderate and severe impairment it is, like for @mango, external circumstances like needing to replace a broken washing machine or meeting basic needs that force over exertion. However, much earlier in the course of my condition when I enjoyed spells of transitioning from...

My GP has regularly checked my vitamins levels, and surely for most doctors checking vitamins should be part of the routine tests used to exclude other possibilities when diagnosing ME. So I think if vitamin D deficiency was an issue then it would be diagnosed more frequently. The only vitamin...

I wonder if the use of these acronyms reflect an underlying process that is not aimed [at] advancing understanding or knowledge but rather at developing marketable products. So many of these trials take the superficial form of experimental science, but are in reality PR and marketing exercises...

Thank for a clear cogent account.

Does it quack like a horse? (Sorry couldn’t resist)

In summary the factors I see as complicating responding to this poll include - energy requirements of accessing food and/or support available to access food - portion size, eating and digesting are physical activities which can trigger PEM - food type issues that are ME specific, food...

The impact of my diet is not simple enough to adequately squash into a poll, though I chose the third option of eating making it worse, this may relate to inadequacies in support available in relation to food, rather than food in the abstract being a problem. The impact of eating varies at...

I had thought I had seen it linked to from the MEA Facebook page. I will see later if I can find the link.

Attempts to get back into working have for me been associated with significant relapses.

For me what I see as frustrating is that there seem to be a lot of small scale studies with promising suggestions, that need larger scale follow ups. But also it all feels very fragmentary, there are no evidenced over aching theories that might be able to tie all these fragments of knowledge...

For those like me who are ill informed, I needed to check, CDC stands for the American Centres of Disease Control and Prevention, and here is the link to their current Guidelines Library (https://www.cdc.gov/infectioncontrol/guidelines/index.html )

Like PACE’s corruption of CBT, this is an enormous distortion of ‘mindfulness’ as originally intended. ‘Mindfulness’ developed in the context of early Buddhism in the mid first millennium BCE, not to promote specific ‘ideologies’ but rather to develop insight. Having specific objectives is seen...

There seem to me to be problems on four levels - deciding what research to fund - decisions by ethical committees and monitoring changes in ongoing research - deciding what should be published and policing the consequences - how published research influences clinical practice and health...

I have heard it said that either Wessely or Sharpe did at one time say they were not talking about ME but about CFS, but I can’t remember which of them, and there seems a lot of confusion, with nothing unambiguous in writing.

I would love to know what Sharpe thinks his answerable research questions are? His subsequent research has consistently failed to address any theoretical understanding of ME/CFS, but rather seems designed to confirm his belief that exercise and CBT are wonderful. He has even constantly failed...

We really need data on the number of people with such as PPS who learn to avoid where possible any medical contact or to try to hide these symptoms or associated diagnoses when forced to interact with medical services.

In this chapter CFS is misdescribed as just the symptom of idiopathic chronic fatigue and any associated psychological issues. Anyone answering this discussion, by most contemporary diagnostic criteria, does not have CFS, CFS/ME, ME/CFS or ME. To state the obvious, Sharpe deliberately or...

What not to do! Don’t climb on a chair to change the battery in the smoke detector and then press the button to check it is working without bracing yourself for the startle reflex when it goes off. And certainly don’t repeat the action a second time a couple of minutes later. At least only...

I echoed the need for more serious research on this, rather than the pointless rounds of inconclusive CBT research. With me, avoiding certain food stuffs, drastically decreases the frequency of IBS, but I still have episodes associated with PEM and sometimes with migraines. Interestingly with...

Well done, an excellent letter. Would a petition of support for the letter, perhaps with international signatures be any help?