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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...

Yes, please! Only, if you have the time and energy though @Sly Saint.

It's very difficult. I often think that our descriptions of how having ME/CFS feels can make the condition sound psychological. I guess that's true of any conditions where you talk about how it feels subjectively. I agree with @ScottTriGuy too. We have an uphill battle in that not on!y are we...

Some of the issues I have, as someone who has been sick a long time now - Initially, I had some real unpleasantness from people because of their perception of the illness. I was caught in a Catch 22 in that, because I now was diagnosed with it, I was no longer a credible witness. So I...

Forgive my cynicism, but they are an easier sell for what's listed in the discussion section. Younger people are more likely to be demanding return to careers, working full time, having families.

Bolding mine. This whole thing is semantics. Use plain, clear English and be entirely unambiguous with the patient. Don't make vague optimistic half promises. Personal empowerment? Patronizing bullshit. As for the bit in bold -..... that might be true for some, but certainly not for many...

I had a brief look at the first few questions. The questions are asked in such a way that the survey cannot capture my experiences with neurology. It seems to assume that, if you saw a neurologist, they played some part in diagnosis. Not in my case. Also asked about what information you were...