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I'm not sure we can say anything at all about anyone who reported improvement because of the way the trial was designed and run, plus of course the as campaign newsletter mid trial. All one can say is given the inherent built in bias the only surprise is that the results were so poor...

That seems like quite a handy summary. Helpful to show to doctors and or family or friends who want to know more.

An aside & a nitpicking one at that - Do we know that this is true? I seem to be on a gradual downward trajectory and I know of others who have similar experiences. Of course, some of that might be to do with aging. I do know some people who, temporary fluctuations aside, seem fairly...

AfME also had a member survey - I can't remember when now and if I recall correctly the responses there demonstrated harms from GET too.

I found that actually stopping and resting takes much more self discipline than any exercise regime, sports training or study plan ever did. Apart from the attempt to smear our collective characters, I don't know where this idea that we will all fall into our beds the moment someone stops...

So, it sounds like the bottom line is that even for pacing there has been insufficient research and follow up to identify what works and what doesn't etc. Indeed there isn't. Additionally, what you might need in terms of effective pacing might well change as your illness progresses, depending...

Hi @SamF, welcome to the forum. I have done many if not all of the things you describe. The most significant difference made to my life- 1. Poorer from funding 2. Deterioration in health, because I really needed to stop and rest rather than participating in programs that actually weren't...

My criticism of this is from my own personal experience. In the early years, before I learned from my mistakes I followed this type of advice. I did get bored and was religiously clock watching to make sure I didn't rest for too long. The snag was that 30 minutes is almost precisely the wrong...

I know that many people believe there are adrenal issues, however there is absolutely no evidence indicating that people with ME are any more driven than anyone else. I believe that some research has actually shown that personality type is not a factor. No idea who the researchers were though...

I agree that there does seem to be an increase in allergies, but I would suggest that at least some of that increase will be down to better diagnosis and increased reporting. I have had low level allergies to all sorts all my life. Generally, it was ignored and if something I ate seemed to...

The thing with IBS is that many, many people suffer from it without ever developing ME. I had it throughout my life as did one other member of my family. They didn't get ME. Once I was diagnosed, I did a lot of work, exclusion diets etc. and got my IBS under control. As long as I eat simply...

That may well be true in some cases, but some cities like London in the 60s and I am sure industrial towns bad pea souper fogs that killed many with compromised breathing.

Absolutely. Pacing is about protecting and improving quality of life. It has nothing to do with an overall goal to achieve more.

I think the stereotype/prejudice suited the BPS paymasters. If we take the Camelford (Wessely was involved) water contamination for example - the fact that there is always someone who might take an advantage to gain some form of compensation is used to smear all people who claim they are...

I don't know that they do. Even if they did mention them, that doesn't count as thorough research in my book. I believe that HR monitors may be very useful for some people. However we do not know if they are actually telling us what we think they do without objective and blinded research. We...

In my case, I am the youngest rather than the first born. I have had problems with allergies all of my life. Another reason allergies may be more prevalent is that modern medicine makes it more likely for people to survive. In my first couple of years of life, I am told I was rushed to A&E (...

When it comes to pacing I have a concern about about HR monitoring. I raise it here as it was mentioned previously in the thread. While there is evidence that HR monitoring can be helpful for some patients, this evidence is anecdotal. If we are discussing scientific evidence and how rigorous...

I do believe this is true, for some patients. I naffs me off is the them and us tone. I don't/won't tolerate being pushed or dictated too. I don't see why anyone should. Patient/carer relationships be that doctor or nurses, should be based on mutual respect and trust - a working, equal...

I'd much prefer they just did their job. They don't let the patient lie around all day - even if that's what they might need. Since when and why did the patient become the enemy who must be made better despite themselves? What about mutual respect and consideration? Some people should bear...

At the milder end of the scale many don't take it seriously enough, or take on board BPS advice to steer clear of other patients, so they don't educate themselves. Or they are still too busy struggling to work and have nothing left in the tank for themselves so can't investigate further...