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And they don't work for so many people despite they fact they carefully select people beforehand so as to include only those most susceptible ready for the process.

I think one of the many issues with PACE and the usual crowd pushing BPS is that they were so focussed, if not biased, towards the treatment they were researching they failed to use the many opportunities such a trial would give to learn more about the illness or group of illnesses that were...

I wouldn't take any chances based on that but rather err in the side of caution @MeSci. As far as I know (& I am no expert) most of the symptoms we get with colds and flu are not symptoms of the infection itself but are caused by our immune systems fighting the infection. Being asymptomatic...

I wonder if all this talk of remote learning during the pandemic will make any difference for the education of kids with ME or any illness that limits the ability to take part in school.

Also if this was the case wouldn't there have been other important avenues to explore? If they were studying exercise intolerance, especially in people where deconditioning was a perpetuating factor then why not use healthy, albeit sedentary and deconditioned controls? If necessary they could...

I've been advised not to have the flu vaccine either @lunarainbows because of the risk of adverse reactions thanks to allergies. The issue isn't as pressing for me as, ME aside, I have no reason to assume I'm more vulnerable than the next person. I plan to wait and see. When we get to the...

I think I am following @Jonathan Edwards argument about casting a wider net and monitoring subsets of patients in scientific trials, including PACE. Does this not make the lack of reporting of harms even more egregious though? Is this not the flip side of casting a wide net? You specifically...

:hug:

Ah,.now here we differ. Cognitive exertion - even if I take mini breaks immediately at the onset on ROLS (rapid onset symptoms) sill cause delayed PEM. Especially if I repeat that several times during the day and it will be even more pronounced if I were to do that several days in one week...

:thumbup:. Well said!

Does O'Leary have the slightest understanding of what life as an ME patient is really like? Not just the suffering caused by having ME itself but the additional burden of dealing with a disbelieving medical system that makes character assassinations where it should provide support, denial of...

I agree to a certain extent. Conflating chronic fatigue where fatigue is the only symptom and chronic fatigue syndrome doesn't do anyone any favours. It is true that some researchers deliberately widened entry criteria to include those with chronic fatigue and even exclude those with ME but...

Never mind the content - can we really state with such absolute confidence that ME, CFS & FM are "Central Sensitization Syndromes"? I think not. As for food.......you can waffle on all you like but the basic starting points for looking at food & nutrition in an illness like ME have to be-...

That bathroom business sounds very difficult @Yessica. I wonder if the rinsing out would be difficult in your current situation? Also would this not be equally hard on the arms? The other option which is not an option currently, mainly but not only thanks to covid, would be dreadlocks. A...

I don't know if these are suitable for ingestion @Amw66 but these might be worth a look. https://www.costco.co.uk/Health-Beauty/Bath-Body/BetterYou-Magnesium-Flakes-1-kg/p/208752

It reminds me of a TV interview I saw with Dame Shirley Conran who developed ME. Her doctor told her that her illness was really down to attention seeking (paraphrasing) and she pointed out her mantelpiece was full of invitations to all kinds of parties and society dos. None on which she could...

I am in the UK & I was diagnosed with ME for all of about the length of time it took the diagnosing consultant to say something along the lines of - "but I am going to also have to use the phrase CFS. If I don't others will just call it that anyway & may disregard what I write about you...

Actually I think that's a really good point. I've not considered that aspect before. In the pre social media era, where sick people are unlikely to feel well enough to go round detailing all their symptoms to other people, it is far more likely doctors discussing the epidemic will have more...

You went and said that out loud! :laugh: Bet you an extra tenner donated to David Tuller's next crowd fund campaign that phrase will be appropriated & appear somewhere within the next.....let's give it 4-6 months.

The easiest way to be clear about that is have separate private and professional accounts. Some organisations might still start disciplinary proceedings against a person if they publicly say something in their personal accounts that reflects badly on their employer. Especially if they have a...