A Normal Converstion

A Normal Conversation Between Heroes.

We take a normal conversation as such an everyday occurrence a minute to minute nothingness that happens all day every day and sometime we wished it would stop. This insignificant part of life we take for granted. If we feel down and despondent we talk to a friend, even a stranger can uplift our spirits with a single word or two of acknowledgment.

Imagine if this gift was taken away and you could only use it once in a month. What if listening to the TV is just too much? Cocooned in a leaden body wracked with pain? How do people cope? What makes them still have vitality and love a thirst for life? What keeps them so upbeat that it makes you incredible ashamed of your ever increasing needs, we need more than to be heard and to be listened to.

Naomi was forced into a get better by increasing small movements and can be seen in Voices from the Shadows http://voicesfromtheshadowsfilm.co.uk/welcome/reflections/

She has been left disabled, in pain and forgotten by the medical people that harmed her.

Caryn was 14 when she fell ill, sleeping mostly for the next couple of years. She was a little better from the age of 19 to 21, and then became bedbound after another illness. Her family has left her because of the continual misinformation portrayed by medical professions at Bath lead paediatric who researches ME/CFS Crawley, as in recent days with the enrolment of children for the MAGENTA trial; this idea that you can robustly increase yourself better with upbeat determination, is going to cause more children to be left in this near end life state, which, for some goes on for years.

These normal conversations that run on Facebook, the ones we dismiss out of hand, are where those who cannot be involved in normal life, go to have some normality. It can be proven that for a ME sufferer normal movement is the same as an athlete running the three minute mile. It takes a three hour battle just to enable some ME sufferers to sit up-right; some cannot sit due to their body not being able to tolerate an upright position. Each of these feats the one minute mile and sitting up, is a marvel of the body’s ability to battle against all odds, but ME suffers are treated like modern-day lepers, no one wants to know or be associated with them. If they try to tell their story or question the rational of trials, here in UK they are ridiculed beyond endurance by all news/media and doctor forums led by the researchers of the PACE trial.

On one of the odd occasions Naomi was able to connect on FB, she popped on my screen. It is always a joy to see her upbeat pictures and gentle wit. She is my hero of endurance. There on my screen was a message from Caryn, who quickly became another Hero. I haven’t changed much in her message, you can tell when her energy is low her spelling goes, and I know from experience how embarrassing that can be:

I am very similar to you. I live in the dark. My mobile is on a dim light. I can move my finger on my touch screen phone. I can squint my eyes to look. But I cannot talk as such very much. Very noise sensitive. I hardly ever have back ground noise like a T.V on. I love music. I often share a song on facebook I can’t listen to. So I don’t forget I love it, encase you see the same songs even if I don’t reply straight away. You are so strong.

Naomi replied:

Thank you Caryn. I feel very fortunate as I’ve improved from the level you’re at, and have some quality of life now. (Not by normal standards, but very much so in comparison to where I was) I know its absolute torture where you are. Surviving that is the real strength.

Caryn replied:

Thanks. I am happy you are bit better than you have been.

A simple loving conversation to support, by two people who wait a whole month to converse, hold that thought, in what state would your mind be in, if you were in their situation. Not able to reach out for your phone and be part of the world. Enclosed, cut off, abandoned by society, because they have been told they are “the undeserving sick” Yep that was actually said by the PACE trial theorists. Both these ladies have been ill for 10+ years! 10 years of living in this sort of confined pain.

Crawley believes this illness is started by an infection of some sort, and either a belief you are still ill, or you have not got enough sleep at night or exercised to keep your body fit, is why you are still behaving like you are ill. Could these two things be the only reasons that are keeping someone so ill? Now I ask you, does that seem right? Remember Crawley does no tests on these children even now proven evidence that ME patients bodies are fighting hard to survive. We hear of no other research that proves ME is a complex multi system disease, with a strong neurological element. Julia Newton has done some excellent work and Rituximab trials are exciting researchers worldwide, with our own Jo Cambridge doing some sterling work, but we don’t hear about this in the News or from the mouths of doctors, or on any interview?

My last conversation with Caryn who is all alone in the world:

And her having fun

Jess is another inspiration that could be helped with the new and upcoming research around the world, but she would not get better with MAGENTA trial:

https://www.youtube.com/watch?v=4AkStAwGQck

In the last few months I have heard of several cases where the hospital has rang the mother and this is the sort of conversation we as mothers have to put up with ‘they said it was ridiculous that I thought I couldn’t take my child to the appointment and what did I imagine would happen if I took her’

The mother was reported to her GP, who has referred mother to social services. Unfortunately it is impossible to put in complaints regarding child protection, as I have been informed responsibility lies with the person who made the referral. You as a parent have no one and it seems no rights. I don’t think Association for Young ME Suffers would want to help, against one of their medical advisers or the hospital they work with. So the battle still goes on.

There are no figures kept and unlike other abusive behaviour you cannot track who makes the allegations and how many they have made against innocent parents or how many are unfounded. Tymes Trust, kept busy and are the only safe option for mothers now. They are stretched to full capacity.

Dr Speight was taken to the General Medical Council, one doctor who has stood up for children who have been medically abused because the NICE guidelines are too fluid and can be abused.

Over 200 children are being recruited for MAGENTA trial and Yet Crawley does not know what is making the children ill, or how to diagnose ME, has no severe patients and asks what recovery is? Would you trust this sort of approach? Would you like to know all information before your child was put on a trial? Would you be suspicious if you were told not to investigate the facts? She says no harm will come to the children. Will these children get hidden like Naomi, Caryn and Jess? Will Crawley take full responsibility for the harm done to the children who partake in this trial, or will she be able to hide the information like the SMILE trial.

Mothers have sent petitions to AYME but they don’t respond, they take their messages down and we are gagged by every means possible, including hidden threats like the one given out for MEGA trial ‘You will be sorry if our trial does not go ahead’. Then in the media there is a rally call of so called nasty comments left on social media by ME sufferers. 

I ask you what would you do, if your child was harmed and were told to not tell the truth and keep harming them with the wrong treatment so social services don’t take your child away. Would you let the perpetrators keep harming brave children that just want a life, any life, other than at home on their own unable to play? As any parent I need to fight, is that wrong?

I am one of those 25,000 mothers. I am under threat every time I call a GP because my son is in pain or ill, or ask for tests even though it took 2-3 years to get diagnosis of coeliac or POTS, which as I had suspected came back positive. My son suffered an episode in the GP surgery of what I now recognise as PoTS and was rushed into hospital. Later I was made to feel foolish, even though it was not me that asked to go to hospital? 

They do not want to label a child with EDS they say, even though this condition is associated with ME and can have life threatening consequences, because the medical profession do not like the illness! All parents want is a proper diagnosis to support their child and regain their health.

Just a point of interest the PACE trial theorists say that allergies are the modern society’s way of blaming devils, apparently their theory is we need devils in our lives to blame, and you want me to trust them?

Do not forget ME

I just had a reply from BBC standard reply and no return the funny thing is they quote the same abusse on Wesssley and only one research paper in 2015 on Mady hornig as balanced reporting. 5000 + papers and research on ME and only one? Two on the harms done to researchers, says it all does it not BBC.

BBC its the same old stuff as PACE? Mixed researchers where or are they? Getting ready for MEGA already? Discussing ME is TOXIC? From which side/

Ebola only one person in UK gets funding and research. 250,000 people with ME 25,000 children and they get PACE trial and MAGENTA? With small studies thrown to Julia Newton, just to show willing?

Dear Mrs Rodwelll
Many thanks for getting in touch about BBC News.

Whilst we’re disappointed to learn that you were unhappy with our coverage, we'd clarify that this is the largest clinical trial of an intervention in Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME) and is being directly funded by the National Institute for Health Research (the research wing of the National Health Service). This makes it a significant story.

Our coverage has been a mix of why the researchers have decided to undertake the trial and the personal experiences of patients (particularly children) with the disease. The Association of Young People with ME – a charity that represents children with the disease – and the UK’s Medical Research Council both say there has been a lack of attention given to CFS / ME and that this trial is needed.

The BBC cannot ignore stories like this and has reported a broad range of CFS / ME research - including striving to find a biological cause in www.bbc.co.uk/news/health-31644618; the difficulties along the way in www.bbc.co.uk/news/health-15017660; the threats sent to people researching the field in www.bbc.co.uk/news/science-environment-14326514; and why discussing the disease has become so toxic in www.bbc.co.uk/news/health-14883651.

We hope our reply here helps to clarify our approach. Many thanks once again for taking the time to get in touch.

Kind Regards

BBC Complaints Team
www.bbc.co.uk/complaints

NB This is sent from an outgoing account only which is not monitored. You cannot reply to this email address but if necessary please contact us via our webform quoting any case number we provided.

Humm so are they 

Invest in ME are pushing for a Biomedical Center in the UK and have had to fight every obsticle, they are also doing a lot of biomedical research that if shining a light on this illness. If you can just give a pund I would be very greatful.

https://www.justgiving.com/fundraising/Tilly-Moments