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I agree with you @Ravn, and i would like to add that many patients go through long periods of time without any infection (such as getting a cold), but PEM is often manifested by tender or swollen lymph node, sore throat and the feeling that an infection is coming.

That is a bit of a scary thought but general practitioners do not know the difference between criteria, or the nuances, and most of them would not know what post exertional malaise means. And in Canada, most physicians do not even know the Canadian Consensus Criteria. Most patients have had to...

It’s just a possibility amongst others, but somehow i remembered my nursing lessons. It is worthwhile to get it checked out and rule it out. I am sure the neurologist would have reviewed your meds anyways. Sending my best wishes.

Hi @Squeezy lithium toxicity includes tremor, and it may be useful to get your Lithium blood levels checked just in case, even if you have had the same dose for a long while. Sometimes, your drug clearance changes due to liver or kidney function. https://en.wikipedia.org/wiki/Lithium_toxicity

Congratulations to everyone who worked on this grant application and that made it successful. This is great news for all of us around the world.

I really dislike the term ‘long haulers’- it edges on the derogatory side, almost blaming the patient for not recovering as quickly as they should.

Agreed. It is pathetic to give a psychological profiling to all diseases that are poorly understood. It stigmatizes and decrease the likelihood of receiving competent care while increasing the likelihood of getting a psychiatric consultation or psychological treatments when it is not...

Here is an explanation on the term ‘anxiety sensitivity’ from wiki: Anxiety sensitivity (AS) refers to the fear of behaviors or sensations associated with the experience of anxiety. Bodily sensations related to anxiety are mistaken as a harmful experience causing more intense anxiety or fear...

(Not a recommendation) (can i roll my eyes?) Psychological Correlates of Patients With Postural Orthostatic Tachycardia Syndrome (POTS) All authors from Cleveland clinic Abstract Psychological symptoms are frequently reported in patients with Postural Orthostatic Tachycardia Syndrome (POTS)...

I answered yes, as in general that reflex is very sensitive, but i would say that within that yes, it fluctuates over time.

What other disease that is given life sentence receives only GP care? In which way should it be acceptable? In Canada, GP’s are the gatekeepers to health care. They get to decide what is worthy and what is not worthy of further investigation and transfer of care/shared care. Most GP’s would not...

Sending my best wishes @Graham , i hope your medical team gets to the bottom of your problem

Uh huh. That group may still be living somewhere on the internet. I believe they fundraised to send her to conferences. That went on for years. Some were bullied by these militants. And back in the days if you had a XMRv negative status, you didn’t have ME. It’s a dark period of our recent...

So this came up on my twitter feed.

From one of the questions that were asked, they seem to be focus on replacing the name to be more acceptable for the patients, and i appreciate their efforts, I think it is much needed to respect and believe the patients when they express and explain the impact of their pain. However for me...

Unfortunately, the name will forever be associated with its supposedly correct and incorrect meaning. Both have to go.

That is the exact term, @rvallee, weaponized. Thank you.

Link to article here ... more at the link

If they don’t count you, you don’t exist, no problem, right?

I don’t even want to watch it. Also, environmental approach- geez. If environmental doctors do not even touch the most ‘environmentally-related diseases’, why is it that ‘some’ doctors claim ME and FM are environmental illnesses? It simply stigmatizes these diseases further. When sick with ME...