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I do see where you're coming from @Jonathan Edwards & concede you do have a point. We don't hear the doctor's point of view and they can't comment because of patient confidentiality anyway. I also agree that this video is likely to make some people anxious that they might have this. There's...

What troubles me is not that we don't know what it is, it's how this woman was treated because those healthcare professionals didn't know what it was and what to do about it. So instead of admitting they didn't know what to do, attempting to find some symptomatic relief, assisting her and her...

If you're serious about wanting to tackle potential depression in teenagers with ME then, unless we're talking youngster in immediate danger of self harm, tackle finding effective treatments & means of support for those teenagers & their families first. It really isn't rocket science. If...

Agreed. But I see it as a chicken and egg situation when it comes to severity - which is the cause - constant PEM defining the level of severity or the level of severity lowering the threshold so as to cause constant PEM. The disease fluctuates, PEM thresholds fluctuate, one can be more severe...

Spot on. I used to go away with groups of ME patients and it was so freeing to be able to spend time with other people who didn't turn a hair when you fell over, walked into walls, suddenly had to lie down on the floor or your brain seized. Other people who were struggling in exactly the same...

Like a great many other people I had the odd dabble with Complementary Medicine when first ill. Largely encouraged by other patients, it seemed there was a new miracle cure every other month & you want to get better, right? Maybe they do help some people & maybe they don't. I do know I spent a...

Nevermind, I'm sure Grog also well paid. Happy, smug Grok! :thumbup:

Yep, I used to have the odd remission like that & I would eventually bob back to a certain level if function. Then due to circumstances beyond my control I pushed too far and that was that. In hindsight I look at these remissions & I think it gave me a false sense of managing my condition and...

Are they having a laugh? BPS turned patient testimony into a valuable source of information? I don't give a rat's a$$ if my GP feels empowered. My appointment is about me not him. If he wants it to be about him he shoukd go make his own appointment with someone else! FFS!

When it comes to fasting & skipping meals - IBS issues aside Pre ME I could easily skip meals here and there. It happened quite often and work when I became interested or engrossed in something I just didn't notice. Then I would just feel hungry & go and eat. After I'd eaten I felt fine and...

I understand that it isn't a current requirement in the US or here in the UK. I can also completely understand why there are some who feel they might have no choice but to take the risk but undergo the CPET to increase the chance of getting disability - this is, in a way, forcing them to do a...

On the one hand that's great but on the other - People may be too ill to do the CPET in the first place - I would be concerned that the CPET might become a requirement. People might do the CPET, have abnormalities recorded but it could be enough to tip them into further prolonged ill health...

Exactly. How do you have that conversation with your boss, your partner, your mortgage company, relevant insurance company, benefits agency? They need to know & pressure will be applied until some answers are given. The modern world waits for no man and very, very soon they'll be wondering...

I used to think so too. However, ME is itself a fluctuating illness so a baseline doesn't work. I knew that but it took a long time to get my head around it & I think I wouldn't be so bad today if I'd properly understood this earlier. What @Mithriel describes above is much safer, in my...

Call me a cynic but I suspect this is deliberate. When it's so vague I suspect it's because they don't necessarily want folk to know that no matter how "individualised" the treatment path is the goal is GET & CBT. Some patients may have heard of that so stay away in droves. Those that don't...

I can't answer the poll. Sometimes yes, sometimes no. The better I am generally, the more resources I can input into meal planning. Ready meals and processed food do me no favours. Fresh fruit and veg take some prep. If I am well enough to manage what I eat and when I eat it then food...

Take your metaphor out of your junk drawer, shove it into the waste basket & put it out where it belongs. In the trash. Edit - spelling

This is very much how I see it. It is closely related but we still don't really know or understand what's going on. Also, for all we know PEM is like an iceberg in that the symptoms we observe may just be the tip & even if we seem symptom free it doesn't mean trouble isn't brewing underneath...

Ah! That might be it. I've been taking fish oils as per my consultant's recommendations for over 20 years.

I wonder if it's possible that simply having some entry about childhood mistreatment in a person's medical records makes it more likely to slap a label of CFS on a person. Especially as, in the UK, 40%+ are possibly misdiagnossd.