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That’s a very good point and you’re probably right. They fit a lot in and did a very thorough job. They took a lot of time with it. It came about as a member of the production crew has a loved one who has ME. There seems to be a growing number of people working in the media who are affected by...

Oh not stupid at all, I was surprised they didn’t say he had seen Merryn when they introduced him and I can fully understand why someone would have thought that. I think the vast majority of the ME community would have assumed the same thing. I will pass on the comments to my mum tomorrow, she...

Hi, it’s Merryn’s sister Amy here. I rarely log on but do still read quite a lot but wanted to clarify something about Dr. Gabor who was featured tonight. Dr. Gabor was actually the NHS doctor who we were told about and thankfully saw Merryn and gave her the diagnosis of ME. He was wonderful...

I think so considering that people have physically died from the condition and had this acknowledged, the consistent findings within post mortems, and the amount of serious harm GET has caused to sufferers and how such treatment has caused sufferers to become worse

Brilliant, thank you for getting back to me :)

Hi Cinders, sorry what interview was this? I don’t recall my mum doing any interviews for MEA in a very long time? I’m just intrigued as to what they’ve put as I can’t think what it could possibly be. They asked if they could use Merryn’s image after using it accidentally without realising it...

I appreciate what you are saying and a scientific forum should include both sides of an argument, but if your comments are not about said person mentioned by myself or my actual comments, then please don’t reply to my comments directly as that gives the impression that it is a direct response to...

They live abroad and live in the country where this is happening. This is also someone we knew prior to Merryn having ME so it’s not someone who is particularly active in the ME community

You’ve misunderstood what I was referring to there. I meant the things like being catheterised, a feeding tube etc are already occurring if you are Severe/Very Severe. I’m not giving further details on this specific case because I don’t want to risk identifying the person or the hospital in...

You don’t know the medical details of said person but I’m just repeating what we know of them and what they’re going through. So it’s not unheard of because it’s happening in what they said. In addition, many of those things are already occurring if you are Severe/Very Severe so I suppose it’s...

Me and my mum know someone abroad who is currently in an induced coma for the total length of a year (the person has been in it for numerous months now, don’t want to put any further details so as not to possibly highlight the person or hospital). It makes perfect sense to us that this would...

@Adam pwme excellent video, thank you

I’ve seen many twitter exchanges or personal message between Dr. Christian and members of the public, including that of some friends who have Lyme disease (which he always makes fun of and says doesn’t exist), and every single one makes me like him even less. He comes across incredibly arrogant...

The Very Severe cannot walk anywhere as they are bedbound, not bedridden. They literally cannot move themselves. From not being able to weight bear, paralysis, pain, just slight movement causing PENE etc. Merryn physically couldn’t move herself, let alone get out of her bed and to the toilet...

Agree that the terms need rethinking and potentially changing to reflect more accurate names to the reality. Please can I add a note on Very Severe as I feel this is probably the least known as a reality to the majority. We found the term Very Severe to really downplay and minimise the suffering...

We had no idea this had been released until a few hours ago and you are all quite right, Merryn is indeed on the right. May I just say we did absolutely stress to the reporter that Merryn is the second with official cause of death but that it has appeared on other death certificates but it...

Hi thank you for having read the article and you pose some really interest points. I understand not posed to us but in general, but thought I’d reply with what we found too. In Merryn’s case we found it was all based on sheer ignorance and arrogance of the medical professionals involved in the...

Thank you and I will pass these comments on to her. We always worry as a family when we do these sorts of things. Sending you all the gentlest of hugs, one day the truth about ME will be known by all, not just those in the community ❤️

I thought I would also post this here. A freelance journalist contacted my mum, Clare Norton, about her experiences with the NHS and How they treated both her and Merryn Crofts (her daughter and my sister). It details how we was investigated for Munchausen by proxy etc. Many thanks and hope...

Thank you so much for your kind words Snowdrop ❤️ Sending gentle hugs