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

We Will Never Give Up Or Give In

We Will Never Give Up

Or Give In

‘She who will not be named for fear of bursting a blood vessel, has only gone and copied in the GP, paediatrician, CAMHS, school and a load of other people who will be breathing down my neck for explanations! School have already rang to see when can they expect Sian back in school. The sheer stupidity of it, it states and I quote that “Sian can manage 3-4 hours high energy activity per day without increasing her fatigue!” How the bloody hell does she know that? I told her fifteen minutes four times a day is all she can manage, add that up by my reckoning it’s an hour. Brushing her teeth on a bad day can zonk her out! You go to these professionals and you wonder if they have any ears, because they sure don’t listening to what we say, and they must have grey fuzzy bits instead of working brain cells! Dr Ramsay in 1986 listed the criteria for diagnosis of ME and now the researchers are getting the technology to prove it all, and still the psychobabble twaddle lot, gets heard above reality.’

Carman had opened the chilled bottle of Prosecco, the neck of which she tightly squeezed and twisted cork harshly, as she handed the letter over for inspection while she grabbed the flutes.

‘Four years ago they proved that the heart rate and blood pressure was down to ME and not deconditioning, the harms that bloody PACE trial did, is still doing.’ Becky said as she scanned through the letter, and her shoulders sagged as small whimpers of condemnation escaped. With each little escaped concern, Carman’s shoulders lifted, her back straitened and her normal resolve restored.

Becky went to speak a couple of times, but had to rethink and squirmed in her chair as though this would shed some light on the perplexity her mind was in. Intently Carmen looked at her friend; they gulped on the wine in syncretisation, quenching their joint indignation.  Carmen trying to calm down, intently looking at her friends facial reactions; Becky would never make a poker player Carmen thought, as she refilled their glasses.

‘What meeting is this devil woman talking about?’

‘The one we went to last week!’ relief flooded through and warmed Carmen’s aching limbs that were tightly coiled round her dismay.

‘See Becky, there is no explanation of what high energy activity is? So those muggles will now think Sian can go to school - hence the phone call. Sian can’t even cope with full daylight now.’

This was like a punch to Becky, she had not realised things had got this bad, hopefully she thought it was just going to the hospital and the journey that had brought this on, and she would recover given time.

‘They assured you that high energy is sitting up for Sian at the minute, and not to worry.’

‘I know, but reading down they also go on about shopping as being a good social integration and will support her back into school? The hurtful thing is it’s her favourite thing in the whole wide world to do, you know how she is with designer clothes, she collects them like stamps, it’s like putting needles under her finger nails and telling her to cope, as her nails pop off one by one.’ Exasperation dropped from both their shoulders.

‘But we explained all that. Oh honey your wizards don’t use their wands’ Becky’s flabbergasted reply needed quenching, she took an angry gulp of wine. At this rate they will both be seeing double shortly, thought Becky, as she tried to focus her mind on the letter in her hand. But reading down the words and their implied meaning, just did not make sense. She could forgive someone who had never been involved with Myalgic Encephalomyelitis, god knows ME is a multitude of complexities, but for a so called professional, this letter is disturbing as it is disgusting, she obviously did not understand severe ME.

‘We don’t have wizards, we have muggles, the worst kind of muggles the ones that think they are wizards! When will your wizard be back in action?’

‘The General Medical Council are taking their time, they need to think carefully they say.’

‘What are the Dark Lords trying to hide this time?’

‘Who knows! It’s like a fairy-tale nightmare; muggles find it hard to believe. Unless you have lived in the world of so called medically unexplained illness, only it’s not medically unexplained is it. Four years ago they dispelled that myth of deconditioning. Medically unexplained my deodar, not looked for because you are labelled “the undeserving sick!”’ Becky blew-out through her relaxed lips that expelled soft pillows of air, as she threw the letter down.’

‘That theory was promoted by the dark Lords of psychobabble so a political battering ram could be used by Department Work and Pensions, now the cuts can go through?’

‘It’s just so wrong, remember the hours our girls spent looking at stuff on line to occupy them while they were both so poorly. It was their only joy. Their need to shop at all cost was the one thing that convinced me the psychological element to ME had very little to do with them. Physically unable to live gave them emotional consequences of being SadMad, that dragged them down on the odd occasion, but that was as far as it went. Rather remarkable considering what they were missing out on. The support they gave each other was amazing. That reminds me Beth is coming home next week from Uni and wanted to know if she could come and see Sian?’ Becky could see the pain through the warm smile and regretted her lack of tact. Maybe half an hour or so?’ Gently suggested Becky, ‘She could dry shampoo Sian’s hair make her feel….’

They both took a large gulp of wine, her and her big mouth thought Becky.

In the early days of Fiona’s illness she could remember feeling jealous of Carmen and Sian. The odd time they would go out to a shop, had felt at that time like a knife was being inserted and twisted inside her. Now the reverse was true and how do you cope with that? What the hell can you say to make things a little easier?

‘Have you managed to get out lately? Bite your tong off you over large buffoon in a tutu, Becky shouted at herself.’ I should know better than that, sorry.’ She thought as she sipped, how the hell can Carman go out while Sian blacks out and has nose bleeds all over the place? You prize pilchard, if someone had said that to you, you would have flattened them with a lashing of your tongue.

The tears close to Carmen’s lips were drowned by prosecco; the lightness of its flavour, easing away her need to escape.

‘What I would not give to be spending a fortune on clothes right now, just looking on the internet with Sian would be a joy. They quote socialising twice, did you notice?’ she pointed to the letter ‘and as one of her main targets. For the love of fluffy ducks! Out with friends coping with the lolling around talking frenzy of teenage girls, is just unthinkable the consequences of all these things would put her back weeks, let alone trying to do 4 hours a day!’ Carmen realised what she was saying and looked across apologetically at Becky, who she could see was pained by her earlier suggestion ‘That does not include Fiona, Fiona understands and will...’ Carmen turned round to unnecessarily tidy the work tops. ‘Bless ya, I know you are both desperate to help. But sitting up for Sian is high energy these days, her blood pressure and heart rate goes on a roller coaster ride all of its own. Having to go down stairs is like a Tibetan mountain hike, with all the organising that goes with it, pity there is no shirker, I could do with a shirker.’ Forlorn she put down the bubble filled flue, with a cherry bobbing around the cool fizz and both women giggled into the sadness, their memories floating on the bursting bubbles of time.

Becky did not need telling how body destroying this illness was, and the impact on someone who was suffering like Sian; her daughter had been hit hard by glandular fever for a couple of years, but the two girls treatments had been pols apparat and none of it made sense.

Unlike Fiona, Sian had heroically carried on, while her daughter was flattened by the virus from the very start. When Fiona had pads over her eyes as the daylight felt as if it was burning through to her brain, Carman had stood firm and more or less carried Becky through the bleak times, with her humour, wit and determination.

There was a year where the girls were at the same level of illness and although couple of years apart in age, they supported each other through Skype and the media of the youth. In those days they were mostly bedbound and yet Fiona picked up and started to recover slowly, with dips and troughs, but a steady rise in ability and yet Sian, who had been stronger at the beginning, just kept the same, no increase in stamina. It was like watching your friends family have a slow car crash that you could not stop or avoid, whatever you did.

Unlike Sian’s, Fiona’s GP and paediatric never pushed and explained how long it could take to recover. They had a system in place that wrote letters and talked with the school, organising Occupational Therapists, getting a disability badge which was a god send to enable Fiona to go out. Becky had none of the letter writing that Carman has the five folders full of reports and letters stood to attention near the phone. All the time Sian just kept slowly detreating, it was shocking. She had no tests and Becky could never understand the rational of her medical team. When they had gone to the hospital last week, it had seemed as though some understanding was reached over the seriousness of Sian’s condition, but this letter was a worry.

The conflict of emotions she felt over seeing her dearest friend’s daughter fight against this hideous illness, the same illness that her daughter had gone into remission from. Fiona had struggled through school, but they were always gentle and kind with her, made to understand by the wand of the greatest wizard. Now she was at Uni; admittedly not able to partake in a full Uni life, but had some life, was deeply painful for her. She felt as though her heart was being wrenched out, and the guilt was over whelming.

‘Oh I almost forgot; your YouTube video has gone viral!’

‘What YouTube video Becky?’

Cautiously and with apprehension, she screwed up face as though a blow would be administered at any moment, Becky explained.

‘The one we made last week, when we did the ME challenge. You know how many times you can say Myalgic Encephalomyelitis while sucking helium and being paint bombed’

‘But I couldn’t say it, and we gave up’ Carman stunned expression was a joy.

‘I know.’ Becky broke out in a girlish grin, widening her eyes and raising her shoulders in excitement! ‘That’s what made the clip so funny; they seemed to like middle-aged women pratting about- look we’ve had…’

Carmen had snatched the phone and started to play the clip, at first she winced. Seeing herself in a Victorian bathing costume with a duck inflatable was a little distressing, she really must go on a diet. The shower cap with its sparkle was over the top. She most definitely looked like a pantomime dame. When it came to the part when she was trying to suck helium, being shown by Becky, who was also dressed in the same attire, they started to giggle together heads resting on one another. Her trying to focus on saying the difficult words with a tongue that was semi paralysed by prosecco was hilarious, she had to admit. Sian was maliciously setting off the paint bombs trying to get them in the faces, from her wheelchair. Carmen did not know whether to be annoyed at her stupidity or proud that she was brave to keep going, what harm could a little fund do? The smile Sian had on her face was worth the payback, and when she is able to watch it will give her endless fun.

Her embarrassment was nothing really, no one would know who she is, and those that did would enjoy the spectacle. It would be worth it to get some understanding of this illness out there, even in a small way.

When she looked at the mega amount of hits, it blew her mind, and when she looked at the “Just giving Page” it was heart-warming. People can be so kind.

‘Like you said at the end Carmen’ Becky put her arms around her friend, who she was so indebted to and admired from every angle. ‘We never give up, we will beat this!’

For the first time in five years, Carmen really did believe it!

If you can just give a £1 to my just giving page so that people with ME get the research needed to stop this illness from robbing 25,000 children of any fun in their lives. 

Thank you

https://www.justgiving.com/fundraising/Tilly-Moments?newPage=True

It's Not A Big Dream To Many But It's Huge To Us.

It's Not A Big Dream To Many 

but it's Huge To Us.

Cognitive Behaviour Therapy as prescribed by Trudy Chalder on the PACE trial “Our results suggest that fearful beliefs can be changed by directly challenging such beliefs (as in CBT) or by simple behaviour change with Graded approach to voided activity (as in GET)”. In my experience if you use these techniques without understanding the patient may be physically ill, you will seriously damage their health! Testing is discouraged and yet it is well known many infections and dis-regulations of the body exist.

She also said in affect: If you did not accept that you are mentally ill, then you do not deserve treatment? In anyone’s understanding, does this seem like a person who should be in charge of research on very sick children? Remember also Lymes goes undetected in this country! These illnesses are not the figment of anyone’s imagination, and it is not the sufferer’s fault researchers are looking for a tiny fragment of a needle in a complex body.

The PACE trial is now held within the research fraternity, as deeply flawed and used as an educational tool of how not to do a trial. And yet a well know UK charity for children will not listen to the parents of the children they are there to support with ME. They refused to call for the data to be released which Trudy Chalder was involved in. Furthermore they are asking parents to let their children participate in a PACE trial call MAGENTA, run by Trudy Chalder?

Maureen Hanson has now found inflammation in the gut and would say: “Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin.” This concept was a belief conjured up out of thin air, but convinced medical people to treat very sick people by pushing them beyond their bodies capabilities. When they no longer could do any normal task they left them to fester.

This charity, says we parents and children have to be kind and gentle to doctors. Who may I ask is being kind and gentle to the children and their parents? Research is need for children with ME but not from a direction proven to be in the wrong. We need research that tracks this illness to the point of origin and understand the mechanics of this on the bodies complex and little understood mechanisms. All we get though is blaming easy targets that is to say the mothers/parents!

As responsible parents we ask for information and we are called vexatious. We pull back our children from harm and it is our attitude that holds our children back; as stated in the SMILE trial, again a trial with no results released and the page taken down that held them?

We try and find what is wrong with our children and we are accused of Munchhausen by Proxy. When these allegations get thrown out of court, we are issued gagging orders and liable slapped on us. If we speak openly and publicly we are called liars or hysterical, and everyone stands by and lets this happen to us!

My son was given GET and it made him bedbound, CBT of the Chalder kind made him shoulder all of the blame of his pain and he no long speaks of the pain that suffocates his body, for me it is like seeing someone torture his body and I am held in ridicule if I don't let this happen.

The 22^nd of June 2005 Laurie Taylor on Thinking Allowed: The last word on methodology, and the importance of valid and reliable empirical work, must go to the anonymous political insider who recently characterised the present Governments (i.e New Labour) approach to research in the following manner: ‘it is not’ he Said ‘so much evidence based-policy-making as policy-based evidence-making.” 2011 the PACE trial went into the NICE guidelines and no one has counted the damage.

The PACE trial should be thrown out and the NICE guidelines should be changed, but the powers to be do not want to lose power or have egg on their face and lose money, so like BSE they will hide the facts and we will have to wait until?

After being grilled in a consultation room and after a diagnosis had gone from; “post viral somatisation (Somatisation is a disorder the charity for children with ME advise doctors to look out for?), to CFS and then they wanted to change my son’s diagnosis yet again and take him into hospital for rehabilitation and reintegration with stimuli, they had used the analogy of a car running on petrol with diesel in the tank? It was all very confusing and serial.  I wrote the story below sometime after.

Jump forward a year and my son was given a blood test for Coeliac by a different hospital. His results went way beyond the 128 mark the test goes up to, and 8 months on it is still above the 128 mark. No one can tell me how much more over that number his count still is, or if the numbers are decreasing. He has been wheat free and suffering all that time and yet they still want him to go to school and socialise, so does he – but no one explains if this has an impact on his health and what damage is being done with his count so high? No one has offered to support him through the trauma of CBT.

So to think things through and a way forward I went to Felixstowe on my own one summers evening. The story of the car came to mind as I started to re-evaluate and try to work around the puzzle of ME.

My son also has PoTS, which is part of having ME and keeps him largely bedbound if he does anything over his baseline activities. We are told that to have a wheelchair would discourage him from making a recovery; PoTS starves him of oxygen, so go figure. We have Dr White for that nugget of stupidity, yet Dr White knows all about PoTS he was discussing it with Dr Weir on radio 4 2007.

Travelling really makes him suffer, but if we could just come to the seaside and have a wheelchair to ease his PoTS, it would be nice. However I would have to fight the system to get one and my son - who has been told he is a big strong boy and does not need a wheelchair refuses to have one, people will think he is exaggerating his symptoms, and my heart breaks. The battles, it seems, are endless.

I looked out at a family with a disabled child in a wheelchair, with a breathing mask and oxygen cylinders under the chair; as the seagulls chased and dived around them. My heart went out to them. I have no idea of their troubles or strife’s, but I have to say I felt jealous.

I loved as a child to see the lights at the seaside and the sound of the waves with the gulls, my son and I talk of this often. We dream of going to the seaside near where we live and eating fish and chips with an ice-cream. It’s not a big dream but to us it is huge.

The six weeks holiday we have had one friend round and he has talked on Skype and somehow I have to take comfort from that. I find it hard, very hard though.

Friday, 8 May 2015

If your car was broke how would you try to fix it?

If your car was broke how would you try to fix it?

Say you had this car, I'm not talking about any car but a unique, your prize possession of a car. You had this car from new and lovingly looked after it.

It is a glorious and beautiful sunny day, a good day to go to the beach. You know the sort of day I mean; the one you have been waiting for after a long hard winter. There is a crisp joyful tingle to the air, the blackbirds are singing. The sky for the first time, has that watery blue that makes you want to bath in the light of the warming sun. You really need to get out of the house and the idea of fish and chips along the sea front, with an ice-cream as you watch the sun slowly sink in the sky. Those sort of days that warm the cockles of your heart and soul. The days that make life worth while.

You go to the little car that is your pride and joy and marvel at the paintwork gleaming in the morning sun. You check everything is as it should be and you turn the key. The little engine splutters into life and although your a little puzzled to the haphazard running of the engine, you can't wait to get started, so brush it off as one of those things. Gently you start your journey but the buzz of the engine makes you just want to go with the flow, and as the engine fires into action and everything looks and sounds OK, you put your foot down and the little cars revs with joy.

The top is down the wind is blowing the cobwebs away and the simple pleasure of the beach starts to sing to you as the salty air fills you with memories and dreams. You hear the little engine misfire, and you start to loose speed. You are still moving, so not to worry, we will get there, we are in no hurry. You pat your pride and joy with reassurance and confidence, that when you get home you will be able to sort the problem out.

On the way back home, after just managing to get the fish and chips, you say not to worry we will come back when we have sorted the issue out and have an ice-cream next time. Your little car slows to a stop and you call the breakdown services out.

But they have no idea what the problem is and as you both stand there and scratch and look for problems it starts to rain. The emergency services advise you to fill the tank up with fuel and try again. many times you try to get the little car to the garage until finally you decide to go and get the fuel and fill the little car up where it stands at home.

While you check everything you know to clear the unseen problem out you dream and plan. Glorious days at the seaside getting that ice-cream you never had. going to summer shows, visiting friends and being with family. The little car keeps trying but even if you get to where you had planed to be the little car can barely make it home afterwards. For days and days you try to get the engine fired up again but it just wont turn over.

On the days you have it booked in to the mechanics for an overhaul, it runs - perhaps not perfect and not as it should be, but the engine ticks over. They say to you, just take it out for a good run, and it will be fine, it will clear out of all the gloopy stuff and will be better after that.

Each time you do this your pride and joy's engine keeps misfiring, and the paintwork somehow dulls no matter how hard you try to polish it. Other days it fires into action and you have a hard time catching up with it and fill your heart with hope, but this never seems to last very long. You sit with the little car, dreaming of past outings, the fun with family and friends you could be having. You plan.

My question is what would you do?

Try to keep starting the engine?
Run it flat out to try and clear the problem?
Trust the mechanics with their spanners and wrenches?
Try to look closely at the fuel?
Check the battery?
Look at the alternator?

Severe ME Alert Please Check For POTS ME makes me SadMad!!!

ME makes me SadMad!!!

I have tried but have failed to find many Doctors in the public eye, or even a Paediatric Doctors to take the heart of ME seriously!

They refuse to listen no matter how hard you try. A parent and patient can tell you a lot about the illness you are dealing with but most will just turn their backs and close their ears and eyes!

I do wonder how MAGENTA or SMILE made it through the ethics committee and any doctor that understands ME would suggest that Wii fit a good thing for children. Children love a challenge and only too happy to play until they collapse, everything you read about ME stresses that you have to be careful with their activities?

Any child would love and over exert on such devices and they are told screen time is a red activity? If we do not fully understand this illness, but know lack of oxygen is bad why are these types of research allowed to continue?

Far back as 1986 Dr Ramsay put the involvement of cardiac system as part of ME and yet my GP does not or won’t do a stand test? Yet a nurse in a hospital can?

Professor Julia Newton, has a good understanding of Orthostatic Intolerance (OI). For our children however it is up to the parent to find this information and is incredibly hard to get it taken seriously.

It was the comedian John Bishop that demonstrated what lack of oxygen does to you. When he went through the training for a space station activity they cut down his oxygen so that he could see how it was out in space if something went wrong with the helmet. In those few minutes I would see what was happening to my son. When he is recovering from doing anything other than his baseline activity he goes through this, he can hardly remember his name or process a simple question like: 'Would you like some water'.

The NICE guidelines thought about including OI in 2010, they nodded only slightly in their guidelines by suggesting that a heart monitor should be worn when undertaking any form of exercise, sadly though no one does. I suggest it should be worn for daily activities to better assess the damage being done to heart and brain. What is my reasoning behind this? This is my son’s printout of trying to do a normal activity when I thought he was OK. No real warnings are given to us about the adverse effects of normal activity. Why is this? A simple thing of a friend coming round :

For days afterwards his HR and BP will bounce around, until this gets answered we will never be able to live a comfortable or manageable life. For a 31 mins of activity, whether we build up to it or not has to be stopped if we introduce another cognitive activity and doing a dot-to-dot has the same effect on his HR as running around the garden?

Now new research is coming out from Navioux in collaboration with Ron Davies. They have found that the Mitochondria can sense every kind of danger from the pathogens to changes. they detect a a drop in voltage caused by the diversion of electrons (NADG / NADPH) to make viral components of respond to broad variety of toxins. In this cell danger response (CDR)  the mitochondria respond quickly decreasing their oxygen consumption this prevents pathogens from using the building blocks of the cell to replicate and puts other cells in alarmed state and gets their defences up. This process seems to put the sufferer in a limbo existence and for some just about breathing.

Court Johnson puts it much better than I do and is always worth reading:

http://www.healthrising.org/blog/2016/09/01/metabolomics-naviaux-chronic-fatigue-syndrome-core-problem/

Any how the lack of oxygen is all around the body and I wonder how or why this fact that you can prove gets missed by so many GPs, and hospital staff?

Now if he was on the MAGENTA trial or the SMILE trial even though the Dr involved with ME experience and reports that she is trying to answer the question on recovery in children and adolescents, none of the children under her care are tested for any form of OI ?  Even though HR and BP have been one of the leading signs of ME for decades?

So how safe are these children with ME under the NICE guidelines?

None of her children; who are asked to increase their activities are given a heart monitor or their Blood Pressure monitored during activity or parents told what to look for with the recovery period. Even though this can and should be used as a handy tool to safeguard the body and ensure recovery. The now professor spends her time looking for activities without a safe method of monitoring her very young children under her care when no harm should be done. There are watches that can easily do this and I am sure that if they were used, useful information and monitoring could achieve good results.

So are these trials safe and is it ethical?

Oxygen depletion through the body and particular the brain does what damage? High blood pressure low blood pressure through the day does what?

It is left to mothers like me, to self-educate, when we do we are accused of all sorts of things including Munchausen by proxy. Over 200 mothers with children with ME and many more with Ehlers Danlos Syndrome are put through this experience and the Scottish parliament what control over our children given to teachers and professionals?

Many teachers, social worker, health professionals use |Muchausen by Proxy as an excuse to punish families with children that do not get better or attend regular school. If they understood and had heart monitors this would not happen so frequently.

One mother has been made to take her very ill child to a psychiatrist 4 times to prove what? Because the consultant wanted to prove the whole family were mentally unstable. This is a professional that is the so called lead in the field of ME? What numbers are kept on such cases? Should this not be monitored?

A mother of a child diagnosed with Ehlers Danlos and needed tube feeding was sent to psychiatric hospital and held there because they understood little about the condition. How does that happen, and why do not Doctors stand up for us? We have to be careful Unexplained physical symptoms are not just misdiagnoses from professionals!

My son was put on CBT & GET as prescribed on the NICE guidelines except for the monitoring of the heart and I was told he did not have CFS as he would have recovered on this treatment?

This is 2016 and way back in 1986 and just before he died Dr Ramsey gave the following definition:

“A syndrome initiated by a virus infection, commonly in the form of a respiratory or gastrointestinal illness with significant headache, malaise and dizziness sometimes accompanied by lymphadenopathy or rash. Insidious or more dramatic onsets following neurological, cardiac or endocrine disability are also recognised. Characteristic features include:

1)      A multisystem disease, primarily neurological with variable involvement of liver cardiac and skeletal muscle, lymphoid and endocrine organs.

2)      Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.

3)      Musculo-skeletal dysfunction in a proportion of patients (related to sensory disturbance or to the late metabolic and auto immune effects of infection)

4)      A characteristically chronic relapsing course.”

Research is and was proving his theories. So why was illness beliefs pushed as the cause?

So is it only me, that after the SMILE trial and no data published and after all the worry written to the Ethics committee does someone not ask for the data to be released. Why did not the people conducting the trial ask and respect the parents experiences on the SMILE trial and report it in their write up!

Why does no one look for the tell tail signs of connective tissue problems? This is the top of my son's leg and Dr Speight pointed this out as something to be looked into nearly a year ago! I'm still struggling to get a Doctor to look at this? Dr Speight is now reported to not uphold the holistic view of ME and is not allowed to talk about ME for the next 6 months? A doctor who cares about evidence punished?

These pink and sometimes purple lines show the skin is stretched, now this is on the outside of the body for all to see. What is going on on the inside? The connective part of his joints where he gets most of his pain. We are made up of connective tissue after all!

How many of our children are made severe because they are diagnosed early with ME, but also have POTS and given CBT & GET? Why do we hide the numbers or not record them? Especially when the PACE Trial is full of controversy? the researchers of the PACE trial would like us all to believe that Unexplained Medical Symptoms should be diagnosed when the medical profession are not sure what is going on. Each doctor goes on what he has been taught and at the moment they are encouraged not to test for things that have no complete answer or are complex, this can not be allowed to continue because so many people are left diagnosed with conditions that have treatment and how can we make strides forward if we do not strive to find a physical answer to medical problems?

Intelligence is in the Eye of the Beholder

Intelligence is in the Eye of the Beholder

In 2011 a group of master weavers showed their Emperors of Parliament the cloth they had made for the NHS and NICE called Cognitive Behavioural Therapy - a mind over body approach.

They warned however that you must be intelligent, that you must believe, but most of all you must not test the cloth they had so expertly weaved and they themselves had tested, the results of which you would not understand, you vexatious lot.

So it came about that all who had been diagnosed from then ME to the now CFS were treated as though they were of a lowly intellectual ability, and were told their bodies could cope with normal activity, as it were their feeble minds that were incapable of life. All but a few questioned the master weavers, and looked on at the now barefaced authority with puzzlement. Those few that questioned; though with exemplary intelligence and world leaders in all that is right and true were told they did not believe because they did not possess all those qualities to see the cloth, you have to trust the master weavers!

How the master weavers told stories of madness, depravity and deconditioning of the body and how the few nonbelievers in the cloth were ridiculed for listening to the poor people that told of their physical suffering. How the courts threw out any suggestion the Emperors could be hoodwinked, while sitting barefaced in the cloth themselves. They would not listen to the evidence before them, they wanted to show how they held the allegiance to the emperors, and the emperors basked in the light of intelligence of the mind controlling the body. They banished the truth tellers and stripped them of their authority.

The master weavers bullied, cajoled and groomed the suffering masses into believing their suffering was in their hands, and as their dysfunctional bodies gave out, the master weavers ran away to hide shouting as they ran, it was a miss understanding, that their meaning had been twisted and that the unruly mob was baying for their blood. Silly master weavers, that so called unruly mob only asked for the truth behind the none existent cloth you wove, and for you to understand what recovery meant - getting back your health, as it has always been and forevermore mean!

The little ripples of giggles started to be heard, and the truth behind the cloth was seen for what it was; red faced a mass hysteria that began to grow through the master weavers looms. Would all those fed faces ever recover from hysterical claptrap the master weavers spun?

It seems sadly unbelievable but most silly stories are based on fact and I wonder how many children are miss diagnosed as my son was with CFS/somation disorder? No numbers are kept of children harmed by the NICE guidelines for treatment of ME. It seems the so called leading paediatric Doctor is under the influence of the master weavers and does not truly understand the workings of the Autoimmune system. ME is not in the family history of mental health it is in the bodies whole system  that lets the mind down! So SMILE and MAGENTA trials are a waste of charities time and funds! These two trials should show their full findings to all that ask, but are hidden under a veil of all in the mothers heads! But truth does not seem to account for much these days of fairy-tales and madness.

Our doctors can only treat if they are taught how to heal and treatments are tried, tested and robust enough for scrutiny by other academics and the patients themselves have the last word, for we are all individuals. I would suggest patients should be taken seriously; as how many illnesses have been forged as the patients depravity of understanding and hysteria to find that in the truth of reality, they are the body’s defences in overdrive?

http://privatemedical.xyz/psychotic-teenager-misdiagnosed-as-bipolar-had-a-curable-autoimmune-54353/

No one belittles how complex the body is or how difficult being a doctor is, but I do wish doctors would stop belittling their patient’s agony. Dr Ramsay in 1986 gave sound diagnosis of ME why then did we believe in the invisible and nu-provable "mind body continuum"?

Intensive Training When You Have ME

Intensive Training When You Have ME

Even with the intensive training and grit determination Angus never made it to his last day of primary school. He had two nosebleeds and yet another infection.

It would have been nice if the school had accommodated my suggestion that he came to the last 10 minutes of school, but schools have rules and I am too busy fighting every system that is supposed to support my son to argue. Life is not fair and people are busy ticking boxes with no real understanding of the true situation and if there is one lesson my son has truly learnt is that!

My son had been on intensive training for months and months for a big event in his life! Music on the Green in Stowupland! It is a simple village event that most would take for granted and think nothing of just ambling along to and having a pleasant walk around. Simply enjoying playing a few games, talking to friends and would just be part of the rich tapestry of life. For someone with a chronic condition, it takes planning and determination on an epic scale; that only Olympic athletes would understand. It sound grandiose put that way, but it is exactly how it is with ME.

First he has to get his body in tiptop condition. He has to eat the right diet for his gut flora and fauna to keep the bad toxins out of his system. A lot of food he takes on is because he has to, not because he enjoys eating them. Inevitably the foods he most enjoys are the ones his body becomes sensitive to. Eating no longer becomes a simple pleasure, but a war zone.

Next comes muscle stretching, he can’t move in the normal sense because of the lactic acid his body produces and his unstable and hypermobile joints. But stretching those tight muscles will help ease the day to day pain; well we hope, allow him some comfort when he moves - that’s the plan. Each day we gently go through these small stretches and have to take account of the energy it requires, even though I’m doing most of the work. It sounds absurd I know, but it is fast becoming the world we have to live in as one by one the normal becomes abnormal to his body. Someone with ME produces 20 x the normal lactic acid, so where a normal person can walk for miles before their muscles become tired and feel that familiar lactic burn, people with ME will feel it after a short distance. When they sit to recoup that lactic burn can last for days if not weeks. The acid does untold damage to their connective tissue. This connective tissue damage then affects their internal organs and we are only now beginning to piece it all together.

Car training, because his body has a hard time staying upright, he has to travel in strange positions to elevate the travel sickness he feels; so far he has not found a position that elevates his suffering. His heart does strange palpitations and his rhythm is all over the place and it is the same for his blood pressure. This work horse of the body is like an out of control stallion and runs away with any normality.

With true grit and determination to cope with whatever his body throws at him we made the very short journey to Music on the green. He took control of his excitement as best he could which is not easy when you are 11 and not often out and about.

The first part was held at one o’clock and was a track event of charitable stalls and fairground rides. He won two hammers, a smiley bouncy ball on a string and beanbag in bucket competition, Whoop Whoop! He then rested for four hours on his bed to recover his energy, while his heart rate and blood pressure went back to normal. Then with extreme effort he picked himself up for the big event!

We got there and his friends came to say hello which cheered him on no end bless ya all xxx the heavens opened and cold and wet and bitterly disappointed we went home!!! You can't win everything in life!

We are back in training so that he can attend the last day of primary school! The pain and training will be hard but he is one brave fighter!!

After music on the green he came down with two infections and suffered nose bleeds. Unperturbed we carried on training but a visit to the doctors has put him back yet again. He has suffered nose bleeds and being tested yet again for infections. His body is not recovering in any tangible way at all.

It is one of the hottest days of this year and instead of his normal resting pulse of around 96 he is back to a resting heartbeat of 115. So tomorrow we are faced with a dilemma that we face on a day-to-day basis-that is to say what does he need to do and what state will his body be left in after.

Does he have to go to school? Well I think to say goodbye to a class of children who he has no contact with for the last year is one of those situations that it’s hard to give an answer to, it is the conundrum that ME always puts you in.

25th July 2017

We have to accepted training does not work, nothing allows his body to sustain energy. A year on and even with our best efforts car travel is very difficult. 

I have lost faith in NICE, they are just a front. They refuse to review the guidelines and would rather take the word of research that is both harmful and flawed with vested interests. Even though there are 9000 papers login the damage in the body, there are no random trials so they don't listen? Makes no sense. If it is hard to work out what is happening maybe it is too early for trials? You cannot fix a car if you don't know the problem?

The NHS is just a commercial concern, that turns its back on difficult issues and bullies others.

Angus would love to see his brother off to Australia, but the journey would hold him back so that the beginning of the next school year he will not be ready to have his weekly lesson.

He does not want to make plans for when his brother comes home; because this illness takes all life away from you, disappointment is hard to live with, when it is all you have. But he wants more! More than anything he want to travel to London and go to Harry Potter world with his family. It might as well be outer space to him.

I sit cutting out pictures of a life I once had, for a party we are throwing to wish my eldest son all the best in his placement in Melbourne. I think how to get the best out of the time we have before he leaves. Angus is preparing himself for the fun he has lined up for his brother involving Nurf guns and water bombs and I breath, you have to learn to float with what ever you have, to keep you from sinking.

I have to accept training does not work, and not until we know how the body fails, can we begin to piece back together the energy pack that is need to live.

Until then we are learning to float in a pool of hope and love

Of All The Silly Things

Of All The Silly Things

Of all the silly things they get you to do, bouncing on a ball while you’re eating your lunch has to be the most bizarre! Concentrating on your inner core, chewing while laughing has to be worth more than just an orange on your activity sheet?

How can I tell my teenage girl these people know what they are doing? That our government have our best interests at heart? It is blindingly obvious they do not! These silly ideas may look good written down on a sheet of paper, fooling people it will make them better, but in practice it is life threatening and I do wonder if they had a health and safety check on it. Before you all roll your eyes and let out the exasperated steam of boredom. Bouncing on a ball while eating, honestly, it doesn’t take Einstein to work out the equation for the consequences to that one.

You may ask me why we keep listening to them. I’ve asked myself that many times. You have to remember we are very desperate and we thought we were going to professionals in their field, not a load of monkeys wanting to enjoy a tea party, paid for by government! I’m not bitter, just gob smacked at the systemic stupidity!

It’s not the first time we have been forced into activities that we don’t understand the benefit of. There was that time they told me to get my daughter interested in the world around her. To get her to move around the house, which they considered was the first step to reengage with the world. You do this by doing the housework? They said it constituted an orange on the scale of energy needed. They smiled at us as though we could not understand the concept, and just needed to get on with it and they would be proved correct.

First issue I have with this is; housework – to get you interested in the world around you, really? My daughter does not have OCD so what joy of doing daily necessities would she derive from cleaning? OCD does figure in ME apparently, I suppose it depends in which area of your brain that has been affected; after all it is a neurological disease. They have always known it affects your brain, but do they understand the brain? That’s the question, from my experience, no they do not! Only recently some researchers have devised the right techniques to produce the imagery of damage caused by ME. Not all hospitals have the right equipment though and then you have to have the right person to understand the imagery.

Anyhow, for most young; bordering on teenagers would not reengage in the world around them by housework. I have to admit housework turns me off in life and against most of my family. I’ve seen to many mould festering plates and smelly football socks.

Dust and chemicals are known to affect ME sufferers, so I really don’t understand this, one little bit. I did start to wonder about the clinic we were attending. The person telling me how good this would be for my daughter looked more of a party animal than a home bird; I don’t think she would be too impressed if she was given this to try, I think she would look as stunned at the suggestion as we were.

Secondly they obviously did not watch “Trust Me, I’m a Doctor” out of all the gym activities housework burnt the most energy. The energy that would be used the most would be indignation though! And this is never taken into account! I think I would feel belittled and indignant if it was offered to me as part of the treatment for a disease that offers more pain than when you have run a full marathon, by just going downstairs! When energy is in short supply, do you really want to waste it on housework!

Rosa had always been brilliant at helping me out around the house. As a treat on a Saturday we would go out shopping, as a way of me saying thank you for all her help. The sadness of this particular suggestion brought home with a sledge hammer, how bad things had got and how much M.E had taken from our lives as a family. Going into town was a weekly treat, window shopping and then coffee and cake. Somehow these people are blinkered, and don’t understand people or their lives.

She also has a dust allergy and would sneeze; I wonder how much energy it takes to sneeze? I smile at the image of their reactive faces if I wrote that down on her daily activity sheet? I would say five sneezes would constitute a red activity. I wonder how that constant allergy would affect her body though.

I know it’s not for the fact she wanted to withdraw from the world, I know my daughter, but that she is simply too unwell. They insisted though, that it was the same for all CFS patients, it was part of the illness this deconditioning malarkey. I don’t buy it, but they should know better and in the beginning I was not listening to the people who had been through the system before us. The professionals had clouded my judgement about them. We were different and how could movement, talking, enjoying life make you ill? If you are happy and look to the future, it stands to reason that you will be OK. Little did I know back then!

Threading beads was another activity and when Rosa, then 10 asked what the point to that was, we got a reaction, which enthused the psychiatrist to write franticly down in her notes. We looked at each other with a silent conversation carried through widening eyes and wobbly eyebrows. These conversations normally take place when we meet with the medical team. We would discuss afterwards what a criminal psychologist would make of them all.

Let me just say it again, threading large wooden beads on a shoelace? When you’re ten? Slightly demoralising? Belittling? This is the treatment we deserve for a totally knackered body, immune system and every other system within your body? Even if they were to suggest making jewellery; which I did think of, it would not work. Threading beads sound innocuous but, you have to think and manipulate kinetically, this would take two energy factors, and yes, it gets that basic. 

Colouring books came next. The type that are used for stressed people. It is to put you in a hypnotic state and has been proved to help with brain flow, brain mapping and stress. So we gave it a go. The thing they just don’t get, is the pain and stress on joints when you are trying to do anything when you have M.E! A lot of M.E sufferers have hypermobile joints that hurt, and when you have a disease that also attaches them, this pain is doubled. After an activity, whether you enjoy it or not, you are left with more stress and energy burnt. They don’t listen or look at the individual they just give you silly things to try that sound half reasonable, hoping you will go away and get better. If you don’t agree with them and don’t get better then they start throwing accusations around.

Now most of these things are girly but friends of mine that have boys with ME are treated the same. Now don’t get me wrong I’m all for equality but it don’t work does it?

Doing crosswords and word searches was the next thing. This was suggested at the time Rosa could hardly see most days, she was dizzy and felt sick. Cognitively she found it difficult and this is one I never tried with her. Again it is to do with the brain and its function with lactic acid eroding away the brain cells.

So when they suggested the exercise ball, I didn’t think anything of it. I did question eating while you were on the ball, but they insisted that it would take Rosia’s mind of the pain of exercise, to help with her avoidance. It was useless to say that her reluctance was not due to her not wanting to exercise and that she was aware that new exercises brings aches at first; she was a gymnast. They just would not believe she would suffer the next week or so that pain would increase and possibly leave her bed-bound.

Well it made us giggle; there we were rotating gently as we made sure our posture was correct so that our inner core was correctly engaged, while eating a chicken sandwich. We tried not to laugh. When Rosia reached across to put her plate on the side of the coffee table, she had over reached and cramp had set in. Cramp is a constant problem for her muscles. The ball slipped and piece of chicken had got stuck in the back of her throat.

After I had performed the Heineken manoeuvre, she had been sick and I had given her pain relief, I vowed I would not listen to any more silly ideas. I knew however, they had the power to take everything away from us and make our lives more miserable then it was already. That to have the letters to the school to enable Rosa to be home tutored, so that she reaches her goal of becoming a vet we needed to keep the silly idiots on our side. You have no choice but to try!

She was bright, she was breezy, she was incredibly silly, but she was all we have, so we sat there with our eager faces on, in our multi disciplinary group meeting with our engaging persona, not daring to look at each other.

“Well Rosa the last time we met we discussed your efforts to get back to normal life how did you get on?”

Eager eyes looked over to her, I held my breath.

“Well it made me wonder?” They all lent in for the revelation, the breakthrough they had all been waiting for, she paused longer for effect. “About your health and safety record! Because eating while on an unstable surface is not the right thing to be telling your patients.” Their faces dropped into expressionless professionals, “however the trip to hospital” again she paused to draw out the full impact. “To stabilise my condition was worth it, I met a rather thoughtful and considerate junior doctor, who has found I have PoTS, Hypermobile joints and a problem with my heart, alongside my M.E.”

Their faces were blank, none of them believing what had just happened. M.E is defiantly the chronic illness that just keeps on giving.

The End

Emotions have been hijacked as propaganda to show M.E sufferers in a very disparaging way. What they forget to mention is that laughter, happiness and excitement are all activities and can change the chemicals in the brain, they also have an impact on the energy of a person with M.E. Sufferers know these emotions affect them, just as much as being sad at your predicament and anxiety that comes calling for no good reason and out of the blue.

A multi-disciplinary team must mean that, and it must be led by medical factors firstly and psychiatry secondly if psychiatry is needed at all. Your physical health has a direct bearing on your emotions.

David Tuller, a public health journalist found flaws in the trial which meant it should never have been published:

https://www.youtube.com/watch?v=IGaUBE2RrSw

This was taken from the EDHS website:

A few patients diagnosed with somation/CFS/ME could have Ehler-Danlos Syndrome (a connective tissue disorder)

 http://www.edhs.info/#!symptoms/c1qvq

Patients who truly have Myalgic Encephalomyelitis (ME) do not benefit from (and could be harmed by) inappropriate exercise.  Exercise therapies can leave ME patients far more severely ill than they were before and sometimes in need of emergency care.  ME patients that are able to rest adequately in the early stages of the illness have the best prognosis. ME patients must strictly avoid overexertion to have any quality of life.

Taken from the Voices from the shadows:

http://voicesfromtheshadowsfilm.co.uk/me-cfs-and-research/

The dominant view promoted by the UK Government through its National Health Service, Medical Research Council and the Science Media Centre, has long been that although ME/CFS might initially be caused by a virus, accident or stress, the long lasting debilitating illness these patients suffer is, they say, merely the result of physical de-conditioning caused by a fear of activity or exercise and over-attention to symptoms. This claim ignores the large and growing body of research demonstrating a severe neuro-immune physical illness. It has had devastating consequences for patients as well as for doctors and researchers supporting a physical understanding of the illness who have been threatened with losing their jobs and in some cases have lost their jobs. An explanation of these contrasting views can be found in “Chronic fatigue syndrome: Harvey and Wessely’s (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways” by Michael Maes and Frank NM Twisk at www.biomedcentral.com

For many years several million pounds worth of MRC research funding for ME/CFS has been allocated to studies run by psychiatrists and psychologists examining the usefulness of different combinations of management programmes more appropriate for behavioural and psychological conditions. These are cognitive behavioural therapy (CBT), which was  originally developed to treat depression, and graded exercise therapy (GET) which is also considered to be a valuable treatment for depression and de-conditioning. These ‘treatments’ for ME are actually management programmes. They are used extensively to support patients receiving medical treatment for illnesses such as cancer, whereas in ME/CFS these behavioural management programmes are being used as a substitute for proper medical treatment. Alarmingly these recommended ‘treatments’, particularly GET, has been found to exacerbate illness and increase disability in many ME patients, sometimes resulting in lifelong total incapacity. (Further reading can be found here: www.ncbi.nlm.nih.gov & www.iacfsme.org) There is a video from the ‘FDA: Development of safe and effective Drug Therapies for CFS and ME’ workshop with Prof Chris Snell an exercise physiologist talking about the objective measures that can be used to assess patients severe disability. Here on Day 2 Panel 3 

Lactic Acid and the brain

http://www.cortjohnson.org/blog/2016/03/01/lactate-fibromyalgia-chronic-fatigue-syndrome/#

Shungu believes the increased lactate levels he has twice found in the brains of ME/CFS patients may result from reduced oxygen levels. He believes increased oxidative stress may release substances called isoprostanes which restrict the blood vessels in the brain. Those constricted blood vessels result in low oxygen levels (hypoxia), anaerobic energy production and the release of lactate.

In a small study Baraniuk subsequently tied increased brain lactate levels in Gulf War Syndrome to reduced cognition.  A subset of GWS patients with increased brain lactate levels prior to exercise demonstrated significantly reduced cognition after exercise. Baraniuk attributed the cognitive decline to the brains inability to utilize the lactate produced by the muscles during exercise.  The inability to use the energy resource that lactate presented resulted in the brain using anaerobic metabolism to try and meet its needs.

http://www.nhs.uk/Conditions/postural-tachycardia-syndrome/Pages/Introduction.aspx

In PoTS, for some reason the autonomic nervous system doesn't function properly. There's a drop in blood supply to the heart and brain when you become upright.

In an attempt to compensate for this, the heart races and the body produces lots of the hormone noradrenaline (one of the hormones that prepares you for "fight or flight").

So what happens to people with oxygen levels that are taken from their brain for many reasons?