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@Dolphin I agree. Your point is a good one about some pwME able to donate, but not doing so, because they think they just need to find the right treatment. They may also understand ME as short-lived. Not so, as indicated in the Canadian Consensus Criteria for ME/CFS. ME can last decades. The...

Hi @Arnie Pye I went back to this site, and it says it's only accessible in the UK, and other "properties". So bouncing it from the UK to me, and back to the Forum didn't work. To initially find info on this I googled something like what percentage of people in the UK are anemic? This...

Thank you @Andy. That's interesting. According to Statistics Canada, 3% of the population has anemia (low hemoglobin): https://www150.statcan.gc.ca/n1/pub/82-003-x/2012004/article/11742-eng.htm#:~:text=Approximately 3% of Canadians had,iron, but by% NICE has the exact same statistic...

Likewise: low ferritin started after developing ME. I wonder what percentage of pwME have this same timing.

Patients have long been advised to write down their concerns in preparation for a medical consultation. Advice is to be brief, and prioritize. Now it seems, as noted in this study, those who follow this long held advice, are more likely to be diagnosed with FCD. Good grief...

Agreed. Setting aside the advertisement for this group, the educate oneself advice is very important. PwME need to know more about their disease, in order that they can at least try to impart the info to their doctor(s). Another stage in the battle is getting doctors to understand, and...

Agreed, from a rather disillusioned, Canadian.

Agreed.

This testing is just a snap shot. IME it takes being with someone for several hours to days to see cognitive problems.To note deficit patterns. To keep track of the number of times there are cognitive slip-ups. Plus, people can be very good at hiding their cognitive failings. Some...

:laugh:

Borax is banned in food products in Canada and the US. However, we can buy it off the shelf, as a cleaner in Canada. Don't know if it's available in the US. It is toxic for people and pets.

I've had a couple unfortunate experiences with sports medicine practitioners. Both involved unwarranted criticism, and one of these instances included ridicule in front of others re ME. So although this field is science based, some of the professionals in this discipline leave much to be...

Ah, sports medicine.... rather akin to BPS methods. Or maybe very much in tune with GET/CBT, as presented by the BPS group.

:thumbup:

I don't know how much push there is to get MS patients to "exercise, and you will recover". For some, the buck always stops at the patient's door. The belief that " if you want to recover, and work at it, you will succeed."

Wow, deep, eh?!

:thumbup:

Yes, about the concept that 7-8 hours per night is quality sleep. PwME may have abnormal sleep cycles, e.g. not enough deep sleep. We all know one of the symptoms of ME is unrefreshing sleep. Not all 7-8 hour nights of sleep are the answer, as many assume.

Interesting that pwME in this study have high ferritin. Mine has been intermittently low for almost 30 years.

You're right, Cytomegalovirus is seem as a potential cause of ME. The ME expert I saw tested me for EBV, and Cytomegalovirus.