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Yes! I also get the burning, electric like pain in spine, it feels like the spine is inflamed and pulsating. Also forgot Shaking, arms especially, legs, have spilt the whole contents of a drink many times due to arm shaking. Palpitations, tachycardia, irregular heart rate Difficulty...

I also get all these symptoms, not so much the GI issues though since going gluten and dairy free. I will add a couple more Inability to stand as O/I becomes considerably worse with severe dizziness. Inability to sit up, have to be horizontal until recovered a little Waves of feeling...

Totally agree, we need to mobilize an army of patients, just a few will make little impact, but if thousands of us did it we might just bring about some positive changes. They will at least have to listen if many, many of us send letters.

Copy and paste this into an email and send to your GP. Obviously you need tho change the bits I've written about myself ;) Dear (your MP), Re: Westminster Hall Debate PACE trial and its effect on people with ME Further to my email of 23/10/17 I, respectfully, urge you to attend the above...

see post #74 Robin Callender Smith about 5 months ago Congratulations to Valerie - and all the other ME advocates and ME sufferers - whose critical mass (in the most real sense) has created this sea-change in the reporting/head-line writing relating to ME. Shame on my own University QMUL -...

Basically they need to accept the following points 1. Both CBT and GET are ineffective as treatments for ME and can harm. 2. There are no treatments for ME at this moment in time.

Reviewing a wide range of evidence is pointless until they understand and accept that ME is a physical illness as per the IOM report. It cannot by treated with psych treatments which were designed to treat false illness beliefs. What is the point in reviewing all the crap studies done by...

A very warm welcome to S4ME @Jonas Blomberg, it's good to have you on board :)

I'm the same if my thyroid level gets too low, I get extreme tiredness to the point of sleeping up to 15 hours a day, and then having to force myself to get up as I still want to sleep for longer. Then I am also tired (sleepy) for the rest of the day. I've had ME 27 years and I didn't have this...

I do think that #ME Action do speak for all of us, and most if not all other groups/charities support what they are doing. If ME Action wanted to fund raise for professional PR support I'm sure most would back them.

Lol, I thought that myself but managed to hold back :laugh:

You must be so stressed Liv :hug: I really hope you get a nice assessor and it isn't too stressful or traumatic . I will be thinking of you and wishing you lots of luck. Are you going to the assessment centre or are they coming to you? I hope it doesn't further impact your health too badly, I...

I've only just come across this as it appeared on MEA twitter feed. I wonder what this means for someone with aortic regurgitation? :unsure: Maybe I should print this off for my cardiologist when I next visit? On the subject of ACE inhibitors, I was tried on two different types and reacted...

Charles Shepherd posted this response on fb when asked about a recording or transcript. Charles Shepherd At this stage I'm not sure if there will be a report or transcript of this meeting. I will check with Karl to see if it is being recorded but I suspect the answer is no. CS

@ScottTriGuy and @Kalliope brilliant letters from both of you!

Following on from what @Alvin said, a good osteopath can work wonders too. I was referred to one last year on the NHS I was shocked lol, he worked wonders with my back, it's just a shame he couldn't do much for my hip pain.

Maybe you need a temporary fix for this such as diazepam, not a good drug I know, but excellent to relax muscle spasm in the short term? Maybe your GP could prescribe a short course, even a couple of days would probably help relax the muscles, just a thought. I had a disc bulge once that had...

When will they ever realize that we don't need to learn to set targets or how to increase activity, we need to learn how to bloody rest! I fully admit I'm crap at it. If they could provide us all with some help at home instead of throwing money at these numpties we might actually start to...

Dr Weir would be fantastic, as would Nigel Speight. Dr Weir is private though and they are both probably far too busy defending patients across the country. These are two of very few real ME specialists, could anyone suggest any more?

Is there any chance the Nice committee will see this? This study perfectly describes patients lived experience. Everyone in health care ought to read this.