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What a load of old..... Some people are far more sensitive to fumes than others. For a couple of years I complained that I sometimes smelled gas in our house. It made feel a but sick and headachy, but the smell wasn't there all the time and no one else could smell it. Eventually, we were...

Gentle :hug: to both of you. Sometimes you need a friend to just sit with you and listen. Keep you company as you plumb the depths rather than beating you about the head with rope ladders made out of clichés. Perhaps, sometimes people need try to push positivity on others to make themselves...

Brilliant. I've had a rough week and that has put a smile back on my face.

I think that would be wonderful and should be available to everyone. One of the things that worries me about some advocacy efforts is that sometimes people ask for more treatment and access. I worry this is open to, and has been misinterpreted, as wanting more of the same. It feels nitpicky...

Well, that really rather depends on the GP, I think. In an ideal world you could get in touch if you got a new symptom or one became much worse and have it addressed, but with the roll out of IAPT it could give them just the excuse for a referral. I know I am taking the negative stance here...

I would choose "No - never asked" . The thing is though, given the current NICE guidelines I don't want one. I spend my rare GP appointments perched on a high tightrope. On the one hand minimizing symptoms so they won't decide to try to ship me off to a clinic that best case will just waste...

Is this the same study as this one @MeSci? https://s4me.info/threads/volunteers-needed-for-neuroendocrine-system-study.6430/

There is indeed and we have been bitten on the behind by things like this before. I believe Rhi is female and uses the phrase "having had ME" herself. I don't know what this means. Did they have it and recover - happy for them if so. Did they recover using the lightening process? Something...

I had a quick look. It is a short survey - just 7 questions. However, some of the questions could take considerable thought and quite a long answer - such as how do you describe it and why do you believe there is stigma.

I know what you mean @obeat, but it looks to me that the very concept of the PACE trial was biased as it was designed to simply try to prove that you could push patients off the books in terms of benefits etc. They missed so many opportunities to learn about PEM, because they had no interest...

I think this is a good point and here's where their COIs and the bias they create come in. It seems to me they were not trying to find an effective treatment or cure for ME/CFS. If they were they would have done it differently. It is more that they were trying to prove if you push these...

The snag here is delayed PEM, in my case it can be up to 3 days. So I would ideally need a three day gap. Typically, if I haven't been hit by payback by the third day, I've gotten away with it. It took a very long time for me to figure that out and so I was unwittingly putting myself in...

I have no idea of what goes on behind the scenes here and I am struggling a bit to keep up. With the deck seeming to be stacked so heavily against us I wonder if we should make our concerns known by way of open letter, signed in petition manner. It might not do much this time round, but in...

In the UK they would need to be very careful. Children with ME aside, making complaints could easily get you referred to a MUS clinic (if you hadn't been already). It might affect what they out on your records, if it becomes a psych diagnosis then that will follow you forever and colour every...

Who wouldn't like to see some redress? However.... In the current situation, until we have a diagnostic biomarker, we are low on actual proof. There are too many slippery gas - what precisely is ME, does this person actually have it, does the BPS treatment cause harm and can we prove or...

A number of years ago when I had a young (teen) diabetic living in my house we were told to be aiming for a HBA1C of 9 or lower, but given the teens 9 was okay. When testing the blood sugar levels during the day we were told 10 was the ceiling and four was the floor and we should aim to keep...

But this is very common it's because of hormone surges and fluctuations that are part and parcel of puberty. Puberty affects the demands for insulin and can increase insulin resistance. So this poor lad is seeing some improvement thanks to using these sensors (that his family pay for), but...

I know a young (mid 20s) type 1 diabetic. She works full time and in her spare time she plays & teaches some sports. She was diagnosed aged 4. Insulin treatment /dosage protocols have improved since her diagnosis. New drugs like fast and slow acting insulin gave her much better control...

[Sarcasm] Yeah, you see if you change the way you think you can sort your own hormone levels out! Keep them nice and even. Then of course that will improve your ME out. We understand this is difficult so we can generously allow you to completely waste your time and energy on a nice course of CBT.

I have a family member who was diagnosed with type 1 diabetes at the ripe old age of four years old. Given the experiences of most people on this forum I am.sure you can understand just how.much more difficult it was for her parents who had various other friends & family members who were...