Search results

There are other aspects too to being truthful with the patient - They can be honest and truthful with friends and family and this will make it easier to manage and maintain relationships. Especially if supporting information is provided by health charities, the NHS for example. Setting family...

I think this is such a new concept and so I'm not sure they know precisely what they mean. Definitely. Many of us suffer cognitive dysfunction when in PEM and that makes it harder for us to observe and assess what is actually happening or find the words to describe it. By the time our...

Wow. Amazing. Well done @Dx Revision Watch!

Was it an add for Heineken that claimed it was the beer that could reach parts others can't? Is Michael Sharpe trying to claim psychiatry is the "Heineken" of the medical world? Unlike Heineken, whose fans presumably like it and derive some satisfaction and pleasure from drinking it...

Migraines aside, I always tended to put the heat bit down to inflamed sinuses or allergies. I don't actually know if it is due to that though. That's one of the horrible things with ME. Sometimes you're suffering so much all you can do is lie down and go through it with zero spare capacity to...

Oh no it hasn't.....

Yes, I sometimes get that hot or heated feeling too With regard to a cold compress I sometimes use an icepack (a sports type gel one) wrapped in a teatowel. Also you can get cooling mint roll on gels or creams from chemists here that you can have in your bag or pocket when you're out and...

I'm afraid I'm all too familiar with headaches that last, and last and last. Occasionally, disappearing just in time for a new on to start. I have always been a "headachy" person, even pre ME, caused by hormones, allergies, eyestrain, anaemia, problems with neck muscles, then there's...

Perhaps rather than try to encompass that kind of detailed information re HR monitoring in an information guide the guide could provide links the person could explore when they're interested or ready to take on the new information? It seems to me that links to old style static documents may be...

I think @Ravn makes good points. It took many, many years before I took it seriously enough. Getting the idea in my head that just because I felt able to do something and really wanted to get that thing done, didn't necessarily mean it was okay to do it. There is an element of but surely a...

There is no evidence that the "typical" ME patient exists. This overworked, driven stereotype was invented by the BPS brigade and then this information was spread by the media. Then they added insult to injury with the term "yuppie flu". ME affects all genders, social & economic classes and...

I am not on Facebook, but I disagree. I don't see why people on this thread and this forum should have to self moderate comments and criticism of the MEA or Dr Shepherd because of the behaviour of Facebook members. Just because it's discussed there doesn't mean we can't discuss it here as...

Both sides can call on expert witnesses though. The longer this goes on the more evidence will be stacked against them. I'm not saying we'd win a case today or even tomorrow, but the day will come.

I know people, in the UK health service in particular, who had this happen. A pharmacist friend in particular. She worked in a hospital pharmacy. When she was first diagnosed they were supportive for about a month. Then people complained about favouritism and suddenly she was being out on...

I absolutely and completely respect your right to find whatever silver linings you may. I am firm believer that if you can't change things you may as well make the best of them and have the utmost respect for those who can. Nobody, has the right to tell anyone else to do so. For a charity...

Good grief! i wonder what their definition of recovery is? How do they distinguish between remission and recovery? How do they know that remission/recovery wasn't just coincidental? This strikes me as incredibly cruel. Anyone's pet theory foisted on the vulnerable, rubber stamped by...

I agree, but I also wonder how much is down to stress and how much is down to having ME. For example, it takes much more energy for me to accomplish a task on a bad and on a good (or less bad!) day. It takes much more energy than it would have taken me when well. Then we have the double...

Exactly. That's what I meant but JE said it better. That's the craziness if our situation. We end up asking for second best treatment, or even none at all, because our condition has been hijacked.

Yep. I agree. However, even a sympathetic GP simply doesn't have the time, education or the expertise to manage ME patients in my view. Specialist clinics (I mean ones that are actually fit for purpose mind - not CFS ones) can do a lot more to help patients get and stay as well as possible...

I think they may well be stepping on the edge of thin ice here. One could argue that PACE demonstrated that CBT (directive for ME) doesn't really work. It is now on open record (thanks to forums like this one) that patients haven't found it helpful, have sometimes found it harmful and had...