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To add to the bone pain thing, since getting post viral POTS, I get deep aching bone pain, in my forearms or shins usually, consistently the day after drinking alcohol. I stopped drinking soon after getting ill but very occasionally when I partake that distinct deep aching bone pain returns. Why...

From what I gather they take blood from me/cfs patients and controls. They then take endothelial cells from other healthy humans (umbilical vein etc). They filter the blood to just it's IgG component, then put it in with the endothelial cells. The healthy controls IgG has no real effect on...

I'm still trying to understand how confident we should be with these finding. I understand the difference in gene variants is very small between patients and controls but that's okay since large numbers were used. I also understand they failed to replicate the results using other databases...

@Ryan31337 You can buy melatonin from an American online store like iHerb and get it delivered to the UK without prescription.

Looking back on my OAT test results and assuming this theory is correct then I think my test results co-operate (???) the idea the NET is reduced. If NET is reduced then norepinephrine just sits in the synapse meaning it doesn't get broken down in the cell as much and doesn't get produced as...

@TamaraRC Interesting hypothesis. I would say I fit more into ME2. Always feel worse after high carbs, peaking at around 1hr then drifting back to baseline over the next few hours. Feel like my sympathetic nervous system is always switched on and my heart is always pounding heavily. How...

How likely is publication of this document going to affect GPs? Like do they get a weekly email of NICE updates or will they not be informed at all and only know there is a change if they go look it up themselves? My question is how will an average GP learn of this change?

Thats true for some, others are, or are willing to take the risk. If these anecdotes where to be discouraged, treatment that could lead to improvements in quality of life would be missed. You wouldn't. I should imagine a high quality long term trial on an unproven treatment would take decades...

That is interesting and I am sure that is going on at least some of the time, however it is just another risk you have to take into consideration. If I were to try an experimental, unproven treatment tomorrow, and gain a large improvement in symptoms; first I would wait a while and try to tease...

Fair enough. I was thinking of advocacy along the lines of a doctor saying "if you have ME you should probably take abilify".

You are saying that people are posting false or exaggerated stories of getting better with certain treatments in order to try and prove to insurance companies that they have a legitimate disease? I wouldn't have thought those companies accept that as a form of evidence, instead looking for what...

It is possible to let people know the risks of Abilify, as in, there hasn't been a proper study done on the long term effects of abilify in ME/CFS, that is a risk. I am happy (actually not very happy) to make educated gambles with my health in order to try and get symptomatic improvement. It's...

I think it's kind of like comparing apples to oranges. Objecting to GET, etc due to poor methodology is needed as in many countries this is all that is offered by the medical system and implies the disease is psychological. This is different to patients experimenting with different treatments...

@Michiel Tack Good Article. How did you get bmj to publish the response? Will many people see it?

I also have this coating on my tongue.

Yes that is correct. I didn't much like the idea of fasting so I wanted to get both dry fasting and water fasting done to a degree where I could be sure whether they worked or not. Unfortunately for me they did not but at least I could put the idea to rest.

So you no longer get this increase in heart rate? The reason I ask is, when I was first ill I did not have POTS, as I got worse I noticed I had POTS and then had this confirmed via tilt table (twice, 3yrs ago). If I took the tilt table now I am certain I would no longer have POTS, yet I still...

What where your observations with the heart rate monitor and what test did they used to show you don't have POTS?

@Wonko I agree that not drinking is far more risky than not eating. I speculate that being bloated going in and not bloated at day 7 means that my body had extra water to use than a regular person. On the final day of dry fasting I began getting pins and needles in my limbs, my heart would start...

At the time I had no idea what was wrong with me so it was the last thing to try on my list out of desperation. I knew I felt worse after eating so speculated something was wrong with my gut and thought giving my gut a rest might help. @Wonko I think only people who are severely underweight...