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

Three Tier-system in Education

This is a letter that I have sent in the vein hope it will be read before a meeting that I have just heard about takes place. In reality I'm not sure how much difference it will make but I thought we lived in a democracy, the way this has been handled I don't think we do.

The impact of restructure is a mighty one and at the moment we just seem to keep going through endless circles of change for the better? I think not. Why restructure when you can think wisely and tinker, to get things right.

My name is Tina Rodwell I was educated in a two-tier system in Cambridgeshire, and I’m dyslexic. I was in the lowest classes at school; my teachers and I were exasperated with the situation. They thought I could do better and saw intelligence and blamed lack of effort on my part for my exam results. I just thought I was thick because I could not learn the way they wanted me too.

My husband’s education, caught up in the struggle of putting the three-tier system in place was unsettled. Parents at that time, being told it was a good system. I firmly believe with the right support it could be. If children going up to the middle school were “buddied up” with their pier group of the previous year and again when they first go through the high school, transition would not be a problem. That way there would be no six weeks of worry over the holidays to what would be expected of them or what to expect. I believe this is what the pyramid system was all about and was persuaded of its merits.

My daughter went through a year of turmoil when teachers left because they thought Bacton was going to close.

My eldest son at Stowupland has had drop out teachers with constant replacement teachers. The biggest issue with schools no matter where you live or system you use, is keeping good teachers. I would guess that the conflict between school in fighting – caused by the uncertainty and their hands bound by the job they do, must be unbearable. Overall they are – people that want and need to teach.

All three of my children are dyslexic and have dyspraxia tendencies and a thing called Irlen syndrome. It does not matter to me what you call it but I do understand that we all learn in different ways – people and therefore children are not pre-programmable items. We live in a diverse society yet we still put constraints on it. This is used as a very valuable commodity by government when putting forward fluid statistics to support their ideas, after all it sounds good.

My eldest son wants to be a doctor and would, I think make a good one, but with his disabilities being misunderstood, and lack of consistency of teachers this is unlikely to happen.

The impact of rhetoric of government makes it all sound so plausible but expects us (the bound and gagged public) to walk a walk we instinctively know has no foundation and does not work.

Teachers are not allowed to express themselves, neither are the governors of our schools and trying to get a polite and courteous reply to a simple question has so far been beyond the council.

On Tuesday 26^th 0212 a meeting is to be held in Stowupland high school where no independent parent representative will be asked to attend and they will only discuss one proposal, my question is why?

This has been going on for six years and my children have suffered. Yet I was told to be quiet in one of the first meetings held, as this would not concern me, my son at the time was too young so this would not effect him. My family has been and will continue to be badly affected, with the coercion during this process unforgivable.

My daughter will be at high school taking her A levels when the restructure takes place. She will not know what school or teachers she will have through her A levels. How is this going to work for her and her teachers?

My youngest will be forced to stay in a Victorian school with substandard facilities with two extra year groups. He will no longer have subject specific teachers going into his sixth year of education. Let me just clarify that. He will have one teacher that will teach all subjects with no subject specific equipment.  He will have to wait until he is 11 going in 12 before he will be able to get to school safely (I kid not have you seen the primary schools in these areas) there will be no question of walking our children to school and no proper exercise at school.

He wont have a dining hall he can comfortably eat in, don’t get me started on toilets, a football pitch, tennis court so sport will be out.

Maths teacher and the equipment that they need in these computer frenzied times.  No support for English, not to mention the Sciences, but it is the teachers I morn the loss of, without the teachers what is the education system and that is what this proposal will take away form Angus.

My Question is for what or whose benefit are we changing the system?