Is The BBC Under Government Controll?

BBC Complaints Told Me I Was Toxic?

Well That Fluffed Up My Tail-Feathers!!!

I got the same responce as Countess Mar; more or less the same word for word response. So I wrote a reply

I don’t believe I will get a level or concise response, and will think about making a complaint to Ofcom. Again I do not envisage getting much of a reply there either but feel you have to start somewhere.

http://www.meassociation.org.uk/2016/11/bbc-director-general-replies-to-countess-of-mar-about-coverage-of-the-fitnet-nhs-trial-24-november-2016/

Here is my reply and what do you think I should do next? Any point to it?

Ref: Cas-4074869-G7PJ8J

21^st November 2016

Dear Brian Irvine,

I was deeply unhappy and saddened by your response to my complaint about the mis-information 1^st November 2016 on the Joanna Gosling Show. The BBC is required to be accurate in reporting facts, impartial, and I would say, needs to be respectful to all.

To use the word Toxic in a letter about a medical condition in my view is unprofessional, and undeserving against a medical condition which is so devastating to so many, including very young children, I did take it personally.

Unfortunately I found no response to any of my questions raised, even though it stated that you had “reviewed the programme in light of your concern.” I raised many concerns!

You go on to say the discussion “was on the back of news that a therapy which successfully treats two thirds of children.” My complaint pointed out this was very misleading, not least because the trial had not even started. Furthermore the Dutch trial it is based upon, proved no long term benefit, and had no realistic harm definition, due to the known consequences of over activity in ME sufferers. 

My further point is that you have not included up-to-date research which would have made a big difference to the understanding of this disease and would allow the viewer a more balanced and unbiased view. You should have kept your selves informed and up to date with this illness.

You rely heavily on one particular group of people that the Science Media Centre (SMC) protects, and that have been discredited in their research and claims against other researchers, charities and suffers, the latter never getting an independent voice on national BBC Radio or News, only on some local BBC radio stations.

Listening to Steve Helwetts Media show’s interview with Fran Unsworth Deputy Head of the BBC News and on the board of the SMC, giving assurances the emerging government funding may cloud the transparency and threatens unbiased reporting, I am concerned in this case those blurrings of reporting; “knowing the government is listening”, is not as transparent at she would like?

My understanding of ME is a neurological, musculoskeletal condition with autonomic dysfunction, which causes abnormalities in the nervous system, autoimmune, cardiac, immunological and metabolomics systems putting the body in a dauer (meaning “endurance” “duration” “permanent” type of stasis (a period of state of inactivity) to survive) state. Causing problems: of a continual infections state, general inflammation, inflammatory of gut with connective tissue damage. If undiagnosed or treated in the wrong way for the individual, this can and does have life threatening consequences.

ME/CFS is now under review with NICE, taking into account the new and fast changing understanding of this multisystem chronic condition.

Points Raised from your reply to my concerns:

1.      The program never mentioned the discredited PACE trial of this type of treatment and should have been used pivotal in the debate. It was published in 2011 and was hailed by the SMC and the UK media in general as successful, also funded by the National Institute for Health and Research and Department of Work and Pensions. It was discredited and could have shown the viewers more balance. None of the patient’s views or experiences of this trial; to my knowledge have been actively sought. Unfounded and exaggerated accusations towards severely ill patients have been made by those involved directly or indirectly with the trial, and most if not all have been unfounded. One such patient at great personal health and cost obtained the raw data from the PACE trial through a reviling court case, where the judge dismissed the many dispersion's by the two standing against the data release. The re-analysis by independent statisticians found the data to be fraudulent and that instead of the claimed recovery figure of 22% after CBT and GET, the actual figures were only 7% for CBT and 4% for GET. So therefore the PACE trial was null. This bears direct evidence for parents to base their informed opinion on, for the FitnetNHS trial, which seems to be more or less the same treatment.

2.      The findings of the Dutch study itself, which was quoted by Professor Crawley was inaccurate (66% of participants were said to be “cured”) because it grossly exaggerated and mis-represented the findings of its small trial (Professor Crawley dismisses other scientific provable studies, as irrelevant due to their size). This study forms the basis of evidence of efficacy, so should have been questioned. They purported there was a significant difference in school attendance at six months between CBT and usual care (75% vs 16%). They did not make it clear that children who stay at home to receive treatment are at a big advantage, as travelling and going to hospital can make ME sufferers relapse. The ultimate findings showed no difference at 2 year follow-up. The presenter did not question this and failed in her duty to mention the “recovery” were virtually the same as for the entry criteria into the trial. The two principal investigators of the PACE trial professors White and Chalder commented on that fact “recovery” criteria was liberal and “not stringent”, a point that patients pointed out on the PACE trial and were called vexatious. 

3.      Behavioural theories play a heavy part in Professors Crawley’s Protocol. This theory has been discredited and deflated to the point of not applicable by most in the medical community. This theory was also applied to the Gulf War veterans, who largely suffer the same symptoms, and in the beginning were treated the same way. The implications of the protocol weigh heavily on the mothers parenting style. In this regard the Dutch protocol calls into question “The fact that long term recovery was negatively associated with maternal focus on bodily symptoms could be seen as an indication that during treatment the influence of this specific predictor had not been adequately addressed. And goes on to say a “separate programme for the mother is needed”. This I find rather strange as the trial is child led, by them being involved and reporting on their symptoms? Would this emphasis be acceptable for other neurological conditions or other autoimmune illnesses?

4.      SMILE Trial was never brought up in the conversations, though this is based on the same principles of the FitNetNHS trial. Yet again Crawley weighed heavily on the intervention of mothers and never released the data to show evidence, just alluded to its outcome, that mothers were responsible for noncompliance. What is more probable is that the children were no longer able to take part. The harms, just a small mention of one child and one mother going to hospital, the information however ebbs and flows or gets taken down from the internet. This trial was based on the controversial Lightning Process. This withheld information could have helped mothers like me, to make a more informed choice.

5.      The protocol leaves the option open to question the mother's nurturing style. This should have been robustly questioned in the interview.  Why is the necessity of this over bearing importance on the mother in a curative treatment throughout her trials, when the child has a physiological illness and is why I mentioned Karina Hansen. As Mary Jane Willows (AYME) works closely with Professor Crawley and for Children and their families who have been persecuted in this way, I am very surprised this approach has been acceptable to both of them.

6.      You mention Lizzie Horgan; who I believe was on the Woman’s Hour program some time back, again with Professor Crawley, and brings into focus my main point. Lizzie is learning to live with a debilitating illness, she is not recovered. I would say Lizzie is a level headed individual who is resilient and a great advocate for the ME community.

7.      Diagnosis for this trial: Professor Crawley says is based on the NICE guidelines, but she omits the cardinal characteristic of Post-Exertional Malaise (PEM). This error by stealth has now transformed their prospective cohort into fatigue only. This will lead to confusion and make the findings null and void to ME sufferers. This does not give clarity to doctors, social workers, educators, or parent/carers and can lead to great harm.

8.      You mention Jane Colby; she was given a room with others talking and laughing in the background, which must have been very distracting to talk over as it was to listen to. I found that very disrespectful to a lady who tirelessly works to impart the truth to schools about this complex illness and gain some proper treatment for children with ME.

9.      There should have been another researcher or medical expert that could have given a balance to the debate. Dr Speight unlike Professor Crawley has helped many severely ill children with ME and it would have been most helpful to hear his views on this matter. Doctor Speight has given many talks on the subject of children with ME and was part of the group for the International Consensus Criteria, which is highly regarded by researchers in the ME field. He also understands the importance of PEM.

There are many more researchers in the UK such as Professor Newton, Professor Malcolm Hooper, Professor J Edwards (his open letter about the email sent by Professor Holgate shows how the disregard to ME patients, other charities and researchers, perpetrates through some medical circles, not however protected by SMC), Professor J English, to name a few. Unfortunately they have been hampered by many in the SMC, who have chosen not to report on their findings and on the biomedical pathology presented at the International Association at Fort Lauderdale October 2016

It would seem Professor Holgate's interventions through, amongst other measures, email against young researchers such as Keith Geraghty goes unnoticed. His treatment by some of those involved in the MEGA study has been disparaging over the last few years and you would have assumed a young researcher would have been actively sought and supported by those in the ME field. His efforts have been welcomed by the ME/CFS community and most charities.

10.  You say that the BBC cannot ignore stories like this, however you did ignore the bigger story of the PACE trial going to court and that outcome, and this shows a great deal of bias in your reporting. You also have neglected to report on the British Government becoming the first ever to be investigated by the United Nations for disabled human rights abuses. That it has condemned the “functional” assessments used by the DWP that were developed by the Wessley School using ME sufferers on the PACE trial biopsychosocial model.

11.  You never covered the question of not including the Karina Hansen story that broke at the same time as Professor Crawley came on the show? Neither did you address Sophia Mirza (whose autopsy showed physical problems), Emily Collingridge or Naomi Whittington and it has been brought to my attention of the court case of Ean Proctor. These four young women and young man, are worthy of a mention and to question treatment to illustrate the problems of over emphasising on the mothers input, and the problems that Tymes Trust deal with. They also prove what can happen if you push your body too hard.

12.  However it was the website references that you gave as evidence of a broad range of CFS/ME research that had me the most perplexed. It had just one biomedical study of old, one that show the difficulties that all research faces when trials go wrong, and two that show, the now discredited information about the difficulties the ME community possess towards researchers, which should be amended with some urgency. This I do not consider a balanced or unbiased view:

http://www.bbc.co.uk/news/health-31644618 One story to show biomedical research from 2015 which has moved on considerably and had very little relevance to Dr Crawley’s study. Furthermore, it was not an interview with the researcher herself and was given very little space, though I note you have a remark by Professor White who failed to mention his own study which pointed to the trouble sufferers have when traveling with increase of inflammation? Though I am no expert, I do feel this was relevant to Dr Crawley trial as I mentioned earlier about the travel:

Journal of Chronic Fatigue Syndrome, Vol. 12(2) 2004 http://www.haworthpress.com/web/JCFS  2004 by The Haworth Press, Inc. All rights reserved. Digital Object Identifier: 10.1300/J092v12n02_06

we found elevated concentrations of plasma transforming growth factor beta (TGF-ß), even before exercise, in subjects with CFS (median (IQR) of 904 (182-1072) pg/ml) versus controls (median (IQR) of 50 (45-68) pg/ml) (P < .001). Traveling from home to the hospital significantly elevated TGF-ß concentrations from a resting median (IQR) concentration of 1161 (130-1246) pg/ml to a median (IQR) concentration of 1364 (1155-1768) pg/ml (P < .02). There was also a sustained increase in plasma tumor necrosis factor alpha (TNF-cc) after exercise in CFS patients, but not in controls (P = .004 for the area under the curve), although traveling had no such effect. CD3, CD4 and HLA DR-expressing lymphocyte counts were lower in CFS patientshttp://www.tandfonline.com/doi/abs/10.1300/J092v12n02_06

One about contamination and a retraction of the paper in 2011. I have no idea why you have given this as evidence of unbiased reporting,  as again it was not an interview and this debate again has moved on. Though if you had debated the PACE trial, which had similar problems I could have understood its inclusion. http://www.bbc.co.uk/news/health-15017660

You have never mentioned one of the many important papers and would suggest how wrong it would be to do any form of extended or keep going life style. http://www.openmedicinefoundation.org/wp-content/uploads/2016/08/Naviaux-PNAS-CFS-Metabolomics-2016.pdf  

Maureen Hanson:

https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-016-0171-4

Then there is all the work Fluge and Mella have been doing since 2011

The one about Tom Fieldings story that was given to him from the Science Media Centre, should have never been included. Dr Crawley admitted in a radio broadcast in July 2011 that she had not received explicit death threats but had misinterpreted one email to constitute a death threat and that her local police force had taken no action. Including this I find insulting to me personally, and to the ME community in general. http://www.bbc.co.uk/news/science-environment-14326514

These allegations were unfounded and should never be used against people trying to get to the hidden truth as regards to their very debilitating illness. In October 2016 they were dismissed by the judge at the First tier tribunal as “Without foundation” and “wild speculation”.  These were the same people that have continually been part of your news with regards to ME/CFS.  This type of tactic is used time and time again against all but a few that are protected by the SMC . I fail to see the relevance of the evidence you gave me of your unbiased interviews. To use the word Toxic in relation to any person, researcher or association is unprofessional and a strange term to use. It is unforgivable to use it when you know it to be untrue!

The last one was of the group of people you have reported on throughout your listings given and is very confusing. No coverage was given to any other professional with just a link to Prof Sir Liam Donaldson who states it is a “biomedical condition” but you have to press on the link which rather proves my point about your biased reporting? None of these are interviews or proper debates.

This was again an article by “By James Gallagher” and I think it would have been more appropriate if you had put in his: “The Inflamed Mind” BBC radio 4 program, can your immune system make you psychotic, as it seems to me this has more relevance to ME/CFS - as it would seem research is gaining more information and understanding on ME, it is looking more likely to be an inflammatory, autoimmune, and metabolic, dysregulation affecting the heart, putting the body in a dauer state. It saddens me our researchers have been held back by funding and more importantly support and less ridicule from the SMC is needed to carry these research forward in this country.

http://www.bbc.co.uk/news/health-14883651

13.  To openly say that the FitNetNHS trial promise recovery is in breach of many medical codes of conduct and to mislead patients by promising a cure when there is no such certainty, is in breach of the General Medical Council Regulations as set out in “Good Medical Practice” (2006) which was brought to my attention by the Countess of  Mar.

“Providing and publishing information about your services-paragraphs 60-62

60. If you publish information about your medical services, you must make sure the information is: factual and verifiable

61. You must not make unjustifiable claims about the quality or outcomes of your services in any information you provide to patients. It must not offer guarantees of cures”

This concludes my response to your points over my concerns

I would like to say why this matter is of the deepest concern to me. I am a mother of a 11 Year old boy who wakes up every morning as though lead fills his veins, the headaches are intense, nose bleeds, high and low blood pressure and heart rate, can black out when he sits up or standing still too long, unable to see, cognitive dysfunction so bad that he forgets his name or where he is. In short he is in so much pain and lack of cognition he has no life to speak of. He was 8 when he was rushed to hospital; no scans were performed and not many investigations. They ran through his history and when it became apparent that he had a virus of some sort, they just gave a diagnosis of somatisation/CFS.

After two years of Cognitive Behaviour Therapy, where I was put under immense scrutiny and pressure for my son to recover and my son was told no one will take any notice of his symptoms, my son became withdrawn. I would say after his treatment by ill-informed medical professionals, his strength of character is immense, because he took his treatment on the chin. He never spoke of his increasing pain; he learnt to cope with it. This we found out later should have been taken seriously, and will possibly have lifelong consequences as it was a warning of things going wrong. ME, by the World Health Organisation is recognised as neurological disorder. Step back and think how this must feel for both him and me.

Our restraint and dignity I would suggest, far outweighs the behaviour of the doctors and researchers, SMC, government, MRC and the BBC that insist this is more a matter of mind over body.

He also had Graded Exercise Therapy, which to me in the beginning made perfect sense; you just have to gently get your body back into the swing of life, like any other illness.  But if you read up on sepsis, meningitis, diabetes, the symptoms and the way the heart is involved are connected. Not all illness give way to recovery. Your information does form doctors', educators', social workers' and people in general's understanding and directly influences people’s perceptions, as shown in the links you gave me.

We later found out that he had post orthostatic tachycardia syndrome (PoTS), undiagnosed from the very start and one of the 1986 ME diagnosis criteria by Dr Ramsey? Yet many doctors do not look out for or understand this when suspecting ME/CFS. However, this is not on the Oxford Criteria. If you look up PoTS on the NHS web site choices, you will find a connection to CFS. This is never mentioned by Professor Crawley? NICE guidelines also stipulate a heart monitor should be worn when exercising, I do not think Professor Crawley does this either and I would say this is a worry.

We also found my son was a Coeliac suffer, his reading for the protein was very high and as yet is not coming down enough to be measured on his blood tests. This would have done great harm to my son’s body and he has now grown 6cm in the last couple of months, showing his body was effectively being starved of nutrients.

To complain about these misdiagnoses and our treatment; I have been informed would put me under threat, mothers are accused of Munchausen by proxy. We cannot learn from these types of errors if we do not take account of mistakes. Reading the protocol of the FitnetNHS trial, and listening to Professor Crawley, it is hardly surprising mothers get blamed for their children not recovering. I would say that people misunderstand the seriousness and disability of ME. Over 200 families have gone through this with very sick children, who have been accused, and none have been found guilty. Yet no one ever looks into the behaviour of professionals as to why this happens to innocent families fighting against a chronic illness. Social services or education authorities are left making decisions with not all facts being put forward on the media of the medical understanding, and this why I mentioned Karina Hansen and Sophia. The public should be made aware of this.

Since Professor Crawley made her rounds on the BBC media circuit, many mothers have been harassed to send their children to school and several have been reported to the social services, this I feel is a direct response to your biased media coverage. If you look on the internet for information from the BBC it is clear what message you send out. The reporting is one sided and the truth scilenced.

As a mother you are not safeguarded and it would seem have no rights above the Doctors, educators, social services concerns over safeguarding your child, therefore no balance of facts. If the Doctor you are under does not fully understand your child with ME, and they write to the school stating your child can attend school for 5 hours a week, you as a parent have to comply. If you do not send your child to school for those five hours a week on a regular basis; as happens with children that are fighting this illness, then the school have a duty of care to inform the attendance officer no matter how they may feel about that child’s health or wellbeing. The attendance officer then brings in the school nurse and the social services and because of the misinformation and wrong impression of ME, they then put the child on a protection order. This whole process can take as little as 30 days. The police can break your door down and forcefully take your child away, without you being aware of any safeguarding issue.

Even if the mother has been proven not guilty by a court of law, most of the time the child is harmed by the process and foster careers not understanding this chronic illness, and in some cases they never recover. No one, it would seem, cares to look through the cases to find if the same doctors are making these mistakes many times with one particular illness. Neither do they review cases and make sure the child recovers, with some children getting lost in the system forever.

I hope the above information makes it clear why you should take the time to fully investigate, and that you have the facts, and I would respectfully ask you to make amends. To give unbiased and a balance to the behavioural interventions that you have promoted, and provide the same platform you offered Professor Crawley to those that have worked hard, and tirelessly to provide grounded and provable evidence of the biomedical problems and aetiology that is now emerging.

More importantly allow people who suffer a voice and not ridicule.

Kind Regards

Tina Rodwell

The Freedom to Work - Yes Please

This short story still in its rough form is dedicated to Nicki  and Cathy and all those that have to chose to suffer in silence.

Freedom To Work

Yes Please!

I’ve been living in this flat now for almost six months, and each and every day I get a quick hello from my neighbour, who then decides to come round for coffee, unannounced, with her cat!

Now for some with the simple freedom of choice and with a “normal ability to live”, they would think this innocuous and what appears to be friendly, neighbourly thing to do, a charitable and much needed contact with the outside world, especially for someone who is chronically ill like me. So do I, well in a way. You see the problem I have is that I don’t have the freedom to walk away. I’m pinned down by a body that can’t. I have to say and be lectured everyday about how working could improve my spirits – I don’t need to be told this, I know this. My mind craves difference and when I give it a go, something pulls the plug on my neurons and I am left with intermittent thinking, of the fuzzy kind, no crystal clear thoughts for me.

She explains how the money would give me the ability to live so that I no longer live in squalor! Yes she actually used the word squalor! As if I am some complete moron who never gave that a thought! What makes it so awful and wretched is that she is right, it is a squalid flat! What can you say to that, how can you defend yourself? You see, each night someone, while I am asleep pumps my body with lead, seriously I’m not kidding! Some days just looking after my own hygiene is all my body can take. Innately I am a very organised and tidy person, squalor makes me depressed.

Anyhow I bet even a saint would lose their patients under this much scrutiny, and believe me I’m no saint, nor would I want to be. I’m more of – live life to the full type of gal, why walk when you can dance, why dance when you can rock?

I’m rocking now, although I’m not entirely sure if I’m rocking to get out of the chair Sam sees me as she walks to work or in pain. I just don’t want to face that encouraging smile this morning; I’m not in the mood! My halo has gone missing! But I’m too late; her face is at the window of my bedroom.

‘Morning Katie, How are you this morning?’

‘I’m fine, and you?’

‘Oh I’m loving the spring, perhaps we can go for a walk when I get home - blow a few cobwebs away, make you feel better?’ I slap a smile on my face and she is gone. I know what I would like to blow away.

‘I don’t want to think how I am Sam!’ I grumble and groan as my body adjust to the upright position. I close my eyes as the dizziness kicks in. It makes it real, and I don’t want my reality to be all there is thank you very much – I want to live in a dream world of fluffy clouds for as long as I can. I look across at the time on my phone, ‘I bet a get a shimmy on, my mum will be around in two hours and I haven’t even brushed my teeth yet!’

As I had feared Sam came round that evening, she promised she was on a flying visit. I know though she is trying to get me out of the house as promised this morning. I told her I was waiting for company so now she is waiting to see who that could be. She sips at the coffee that I have just made her. Which means: I won’t be able to finish the prep for my evening meal – I simply won’t have enough energy to do it now!

Sounds stupid doesn’t it? You can’t explain it to anyone who has no difficulty in moving, their blood flow, breathing, with their energy all being normal. Looking at me I don’t look disabled. I ponder on that thought as the devil cat winds her tail lazily and lovingly around my leg. I tense up, not because I hate cats but because I know what is coming, but I don’t know when. The pounce of the Duchess the devil cat is always unpredictable and unprovoked.

‘I saw you out at lunch time with your mum. That must have been a nice change for you? Made you feel better?’ Duchess devil cat jumped upon my legs and purred comforting soft velvet purrs the kind that makes you sleepy. Her warm soft fur comforted my knee joints and a connection was made between animal and human.

‘Yep’ I false smile into my hot chocolate, no point telling the truth. I remember my mum’s face when she took the full force of abuse hurled at her this morning. You see I have a disability badge; it took two years to get it! Even though I am house bound, I still have to go to see the GP, and there is no parking nearby, and the journey alone will make me so sick it will render me bed bound for the next week or more, apparently I still did not constitute a badge! I refuse to use the wheelchair, so it makes it worse. You see the whole process of getting the badge and Department Work and Pensions forms and interviews; they insisted I attended, not only put my health in jeopardy but made me feel worthless.

The process of losing all your function after you do any daily living, is innocuously called Post Exertional Malaise; PEM for short. It is more a kin to having a heart attack or stroke though; as my body closes down to conserve the precious oxygen my body craves. Because my brain is constantly starved of oxygen when I over do things. My body just cannot utilise oxygen or energy, every system in my body is compromised. It is a hard concept to get your mind around. My mum has been a rock for me and she has got her head around it, but we are all allowed to lose it from time to time, my mum lost it big time today.

‘Where did you go?’ Sam asked. I didn’t want to say disability aids, so I lied.

‘We fancied getting so good underwear but we were naughty and brought the most glamorous frilly knickers’. I wish my life could cope with frilly knickers I privately thought. ‘We are fed up with the Polk Dot bloomers we normally get’. She had to gulp down the coffee; she had been daintily and slowly sipping! I lowered my eyes as I smugly smiled into my hot chocolate.

My mum’s beleaguered face haunts me, her frustration hurts me. I had just finished my degree you see when I was struck down with a virus that left me this way; I was diagnosed with Chronic Fatigue Syndrome, the most hated condition of modern time, with I have to say the most stupid and misleading name. Fatigue, everyone has fatigue and I wish it was just a case of fatigue.

My mum was so so proud of me at my graduation; all those struggles to get me through Uni were worth it she told me. My job was to die for, and I would have if my body had let me. We value ability is highly prised; I have no ability, so I am worthless? Today for the first time I felt worthless to my mum. All her dreams had been shattered, they had splintered like a mirror, we only caught glimpses of our former happy self’s. Mum had to give up work to look after me; she lost most of her friends and a life she loved.

Sam drew out of her bag my latest prescription, it was a trial medication and I could see she was itching to ask questions. Sam worked at the Health Centre; she was the softly spoken dragon that refused to help in a helpful manor that mirrors her personality. This job perpetuates her belief that she is a most helpful and understanding person. I’ve seen people staring at her in disbelief at the reception with the comments she comes out with. It makes me smile; I am not the only person she does this to so now I don’t take it so personally.  

‘Would you like to take the cups in the kitchen, I’ve finished my coffee.’ Sam encouraged me to move. I bit my tong but –

‘No that’s Ok Sam, just put it on the coffee table next to you’ Duchess digs her claws in very painfully. As I knocked her off my lap and Sam was about to protest the door opened, and in walked in Peter and his crew followed by Dr Burns.

The suit was amazing, worn under clothes you could not tell you had it on. Even I was impressed with my design and I don’t get impressed with myself very often. The head band was the same and I marvelled at the lightweight and complexity of it all. A small app was transferred to my phone and Sam was bristling with pride that she knew me, which was a first! She was visibly astounded when the whole team congratulated me and said they were in ore of me, considering my disabilities and how much thought had gone into the concept.

‘We have all had a go with it, and boy - were we pleased with the function. Not all of us could cope with wearing it though’ He looked over to Dr Bures. ‘Possibly a couple of tweaks would be needed after someone with a non-biased opinion could be found.

Well what would you do if you were in my position? Would you take full advantage of it, and put your neighbour forward - an ability to get the truth over let alone some well-earned revenge? Well I didn’t have to worry about that, as though by magic with Sam jumped up and offered herself as a guinea pig.

‘Although there is nothing that could compare with what you go through on a day to day basis’ Tom looked at me with such earnest eyes that it made me bloom inside. ‘I think if we did anymore it would be torture for torture sake, and not research practical.’ I have always loved Tom, from our first lecture together. His like a universe of possibilities.

‘Dr Burns was going to take part and as kindly agreed to ask his staff, if they would like to take part in the trial.’ Tom sparked interest in Sam in more ways than one and she took the suit and bristled up to her full height of 5ft nothing, patient high heels, formal skirt and diamanté hairclip in her perfectly plated blond hair, leaning into Tom.

“What a splendid idea Dr Burns”, Sam’s smooth as treacle and sweet as acid voice oozed something like sincerity; which she may later regret. I understand how this illness is.’ Dr Burns looked over to me puzzled. ‘I live next door to Kate; I’ve taken her under my wing’

‘Smother me more like’ I grumpily whispered out of earshot of Sam.

‘I think we should all have a go with the suit, so we can truly understand how it is for these poor people.’ Big mistake lady I thought to myself, as her condescending ways got stuck in my throat so no worlds came out. She had asked no further questions, silly woman.

‘If I try it on now and give it a go, then you can tweak it and the sooner we can start to trial it out’.

‘Splendid beamed Tom.’ I opened and shut my mouth. I should warn her?

Now the thing you must remember of Sam, she has a condition which she equates to every other long term illness since she found out about it. Now, I would not belittle anyone’s condition, but just having one condition does not give you a right to say you understand, or give out the impression you would be able to take on any illness and work through it. You can see my dilemma can’t you? Should I go easy or should I ramp up the ‘muscle cruncher’?

They took great pains in explaining how the suit works, now that she had it on. The electrical currents to simulate the pain, the tightening and how it took impulses from the brain to collect data, how the joints had sensors to show instability and how that affects lactic acid expression, the heaviness of the thin material and how they could control it. She did try to ask how light material can make your bodies limbs feel like lead, but she was no geek and they were off the geek Richter scale. They did explain that they could only cope with 7 on the pain dial app themselves. The dial went up to 14 which is about where they thought my pain was at. I saw a flicker of I’ll show them how it’s done, dance with glee across her face.

Sam was giddy with her own importance, and eager to show everyone including me – probably more me, how she was a trouper and could carry on regardless. They explained with equal puppy dog excitement (that Duchess seemed impervious to) that their aim was to get slowly go up to a 7 while taking notes at each stage.

“It’s just like spandex hold it all up, tuck it all in and give shape underwear” she followed her shape from boobs to hip. Who could blame her with these dishy intellectual types all around you. Sadly for Sam however, her timing was off, they were too engrossed in the app on my phone. All of a sudden she squealed, and went cross eyed. I tried to stop myself from a giggle, but the corners of my mouth curled into a smirk and the giggle bubbled out.

‘Perhaps the inside thigh should be modified?’ I suggested

“What number have you got that on” Dr Burns asked suspiciously. I looked down as I was not too sure myself, they all looked at me clipboards in had for the answer.

‘Two!’ I replied blankly.

‘Two? Are you sure?’ Sam’s eyes were sort of watering. Simon and lead researcher unceremoniously stuck his hand up the sleeve of the suit.

“Yep, it’s a two; crank it up two more, than we will leave it for a while, see how she copes.”

I did as I was told, but instead of the pleasure of showing someone how it feels, I felt and pang of uncertainty as I saw the familiar pain flash over Sam’s face.

“No that’s OK turn it up to the” Another ripple of muscle contraction took the breath away and she held out her hand to steady herself against Simon.

“Just go for a walk hold onto me so your body can adjust to the sensations.” Simon suggested.

We all held on to the childish giggles and comments as Sam walked out of the flat and onto the street like a person constantly hit by a lightning bolt.

They all decided to make a cup of tea while they were out walking and adjusting. We sat drinking and nibbling while talking about the technology and what it would do for the medical staff with their teaching, about other chronic conditions. How it all brings a new dimension to care. They all thought that my idea of being able to process the information gathered by the sweat on how the lactic acid and the heart behaved was - a genius way of gathering and furthering research.

Out of the corner of my eye I could see Sam walk like a cat on hot bricks, the sharp intakes of breath, closing of the eyes and pausing to gain the will to move again.

“Perhaps we should get her out of the suit and make sure it is working properly” I suggested. Perplexed they looked over to me, then out of the window where Sam was teetering in high heels, unsteady and shaking her limbs. Duchess was following looking confused at her mistress, sitting down and looking around and I felt certain I could see the cat’s eyes roll.

Two days later they had the data from Sam’s trial in the suit and they had tweaked it, so that lower settings were incorporated with differing incremental settings for many other conditions and individual tolerance to pain.

Sam had not been round to see me in those two days since she ore the suit, and was frosty towards me as she went to work in the mornings. Today was not a good day for me the PEM had kicked in big time. Tom had been my constant companion. He had said that they had caused the relapse in my condition, the least they could do was support me back until I was better.

They asked Sam to try on the suit again. I could see the horror on her face, but she became my hero when she silently took hold of the suit again. But it was her words that grabbed me the most, when she looked at me in the eyes with determination and grit.

‘I’ll be happy to’ and as she passed me she touched my shoulder and privately stated ‘I have the freedom of taking off the suit, others don’t.They don't have the freedom to work’ She squeezed me just a little and there just right at that second I lost the ability to fly on a dream cloud, as a reality sunk in, but I gained another hero and a true friend!

A bit of word Tomfoolery on a Monday morning

If you have any form of Chronic illness you will know the Hell in Beauty

Add your condition and the beauty of your life: Family, friends, cooking, gardening or just a small amount of time pain free. I want to build a landscape that we live in X

The Living Hell of Beauty

Meet and greet great disaster

With every punch and blow

You stand still

Stand firm I say

Take it like a man my girl!

What the bloody hell is an upper cut?

Oh... there it is!

There is something deep

Within that makes me hold

Hold it in, and take the blow

Solar plexus

Perplexed

You’re from shoddy family

Connections far too low

To be strong of will?

Listen to him, listen close

He makes sense

Does he not?

Shadow boxing

Does not make you stronger you know

Weaker

Hold firm

The truth do will out

Eventually

In the end

Take a look from histories landscape

Torturous

Forsaken

Beleaguered

That soft foggy landscape

Where no beauty should aspire

But see the poppies

The lowly nodding poppies of beauty

Do you hear the voice of the nightingale?

It rises with the truth

And the hidden beauty

And yet, the weasel and the stoat

Gnaw and bite the beauty back

Hide the truth

Behind the veil of fog

That covers the beleaguered soldier’s agony

Their hypermobility flung out with PoTS

A belief system

Not a living hell?

Quiet contemplation will fix the landscape

March I say, march!

Accept you are mentally ill

Because I say so!

You are not living on a

Battlefield!

You are living in a dream world

My Girl!

Because I say so!

It does not smell that way to me Sir

The sun of truth

It does burns bright in my eyes Sir

I see the world as it is

Thank you

I see the poppies

On the gentle breeze of change

I hear the nightingale singing the truth 

In Berkeley Square

And beauty

It has always been there

And is set to rise!

Beleaguered soldiers young and old

Will walk hand in hand

Solid, strong  

And united!

They shall not be forgotten!

Nor will you Sir

Nor will you!

Who has the Best Communication Skills

Tink, my three year old Norfolk terrier cross, had been intently looking into my eyes trying hard to tell me what was wrong. How do I know this? I just do a hundred little detailed signs that we use without thinking, shout out to me and let me know she is poorly and in pain.

Researchers and scientists say us humans are the only ones to have complicated speech and in-depth reasoning and I wonder who comes up with these ideas. That sort of lack of understanding and arrogance has led us into trouble and has stopped us from finding a multitude of things from nature. She may think a little differently that does not mean to say she is wrong and I should not listen to her.

Humans have speech because we have simply evolved that way. But we do not all use the same language. Even after many years evolving still some of us do not communicate very well, even with the power of our vocal cords. Animals are no different from us, in that some are ordinary and some are extraordinary.

If a person is bereft of human contact from birth they no longer have the ability or inclination of speech and find other ways of communicating. It does not mean they have a lesser capacity for reasoning, empathy or learning it just means they used other skills to survive. It may also mean they are very happy just the way they are. So looking on the matter from that view point, I assume speech is a learnt behaviour rather than a unique ability. Every animal on the planet communicates by sense of smell, posture, eyes, and facial expressions. Silent communicators such as the deaf have been ignored or labelled as retarded by the hearing, simply because we do not understand their voice. Is it the others fault we cannot understand their communicating rituals?

Many years ago I watched a program about a man that had spent many months interacting with dolphins. He made friends and had a close bond with a particular young one in the pod. On the day he was due to leave a storm blew up and the man became worried over the safety of this young dolphin.

Now I thought, let me get this straight, he thinks these sea mammals, whose families have lived in the sea for generations, who could communicate by radar clicks, snorts and body posture with possibly a whole spectrum of other ways of communicating and learning we are not aware of and this man assumed they didn’t know or communicate with each other about their own environment? The man was loving and caring and in his field a leading scientist, a very clever man but also very stupid.

He talked in raptures about his concern for this poor animal that could be torn to shreds on rocks in the storm and if this land mammal didn’t rescue him would be sure to perish. Many times he got hold of that young dolphins fin to lead him to safety. Eventually he listened to the dolphin who took him to his pleasure park of water currants that acted like theme park slides. The sea mammal gave the land mammal a marvellous time. Exhilarated over his experience he verbally expressed his shear delight. The dolphin no doubt bemused, swam away. This has always amused me and shown me how arrogant our naivety can be.

With foreign people we just shout at them thinking this will help or speaking very slowly distorting the words sounds that they do not recognise all in a vein hope that this will help. It has been scientifically proven that we look at people’s demeanour and facial expressions but we are not aware of it. Animals are far better at this then us so who really has more communication skills?

If we cannot understand their language how can we be sure their language is not as complex as humans? Take the whales they communicate over miles and with different pods. How do we know they are not talking about the weather or the smith pod’s children that are out of control and taking more than their fair share of plankton?

We put animals through tests of our reasoning and forget to explain why or why they should be bothered. Would we perform these tasks to aliens of higher intelligence? I am assuming they would have a higher intelligence as they got here first, but I could be wrong. It could be that they hit on a quicker way to travel sooner than us but are of the same average IQ.

Let’s face it some people in our world use a tree trunk canoe and have a full and happy life even more so than a scientist on a fully equipped power boat, possibly with a higher IQ too. If we bumped into the man in his tree trunk canoe and took our time and listen to him, we would no doubt learn a thing or two.  

I listened to Tink and took her to the vets and she has just had her second operation to remove a follicle cyst. She is feeling much happier and has just dropped a ball on my foot, her daughter looked at us both and seising the opportunity, picked up her fluffy toy and flung it in the air, I guess its playtime.

Yes Tink I'm now going to play, she wonders over to the door, 'Oh you want to go out?' she sits on the floor 'Oh a Walk?' I get a waggy tail. Walk it is then she jumps up and liks me.

Squeeze Up There Is Room For More, NOT!

Tilly on Her Soap Box About Suffolk Primary Schools

As I was making the pack up this morning I was listening to radio fours ‘Yesterday in parliament’ program, when I did a double take see what you think '80,000 separate plots of public land have been earmarked to build first time buyers houses to kick start the building market?'

So what do you think? I know Bacton middle school has building permission? Is this the real reason they are going to get rid of the three tier system here in Suffolk? Are we going to cram our children in like sardines, taking all their facilities away to get this country out of a banker’s recession or am I the only one that has made this connection?

I had my day planed to the last second as usual but intended to write a blog as soon as I had the time. But dropped everything to write a quick thought down to see what you all made of it.

Now I was in a real flap as I couldn’t find the one piece of paper that I needed the one with the tickets for Angus’s pantomime. We are only allowed three seats each family for grandparents, brothers, sisters etc. so my husband or I will have to forfeit seeing the production. Space you see is at a premium not that you can see the children anyhow as they squeeze them on a small block stage about a meter wide and we sit on small seats and I for one can not see over or around the people who sit in front.

I only got to see a glimpse of Angus last year once and he spent the whole of the performance looking for me. It is a very sad occasion that should be one you treasure and reflectively smile at.

Twenty years ago I lost twins separately at this time of year and as the nativities took place on the morning breakfast shows I longed for that experience. So when after much heartbreak I held my first child in my arms, I looked forward to the nativities at school. But they don’t do Nativities at our school. Everyone works so hard to make the best of it but it hurts when you just cannot see the results. They are going to squeeze more into our little Suffolk primary schools and I’m not sure what will happen then.

It makes me deflated and despondent, why and how can I teach my children values when the Government lie and constantly support those at the top of the pyramid society we have? Us at the bottom are already under a heavy burden from a lucky few whose prosperity is more than self indulgent?

Now off to find blue bird wings for Angus knowing I will probably have to make some, I will put my heart and soul into it and my heart will break because I won’t be able to see him in all his slender.

A very Sad