NICE refuse to take down harmful treatments 25,000 children harmed?

I had my reply from NICE.

For some reason David Hahalam did not want to talk to me. Well I am not important, am I? After all I am just one of the 25,000 parents that would like ME taken seriously to protect the children from harm. A good solid diagnosis for a seriously abused illness, it would seem is too much to ask for. For them to understand, it is their responsibility to stop the emotional blackmail that goes on with CBT under their guidelines. Head against establishment wall I am afraid.

Perhaps they should note that CBT was no good in education and it would appear that in depression it is only a placebo effect, as explained by Oliver Burkeman in the guardian. So for a physical immune response, they are offering a Placebo treatment?

https://www.theguardian.com/lifeandstyle/2015/jul/03/why-cbt-is-falling-out-of-favour-oliver-burkeman

So here is their resonance and my thoughts in red. Please do add your comments in the comments box below.

Do you get the feeling they did not read my letter?

What will it take for NICE to do no more harm to children with ME?

How can they say no harm done if they have not asked those who have been harmed. Do we not learn from history?

When will NICE start listening to children and their parents, let alone the 250,000 patients who have been suffering decades of abuse at the hands of those reported to protect them.

What is the point of NICE to do no Harm?

This is the letter I have just sent to NICE, it is one of many. I sent it at 9.30 this morning 11th July 2017. Below is the one I have sent to my local MP, I will be sending this to all parties, so if you are reading this and you are in a party get in touch, PLEASE.

I don't expect to be listened to, but you have to try and maybe some of you will sign the petition from the ME Association and get involved?

http://www.meassociation.org.uk/2017/07/me-association-petition-the-nice-guideline-for-cfsme-is-not-fit-for-purpose-10-july-2017/

Dear Professor David Haslam, and Surveillance team,

Regarding the decision not to update the NICE guidelines on ME.

I am a mother of a child who has classic Ramsey defined ME. I have been coerced into giving my child CBT and GET against my better judgement. He went from 70% ability to a function of only 5%, for which I was blamed. I AM NOT ALONE IN THIS!

Through my due diligence and care, with an awful lot of research, attending Invest in ME conferences, talking to researchers like Ron Davis, Jo Cambridge, Fluge, Mella, Armstrong, Maureen Hansen, listening to Mark Van-Ness, speaking with Doctors such as Speight and John L Whiting who is working closely with Neil McGregor, my son is now able to get out of bed and have some normal but careful monitored activity around the house. It has taken years to undo the damage done to him from GET and CBT. 

The damage done to myself, and my family is immense, the words for which I do not possess.

Medical staff try to back me, they know of treatments that can help, but they are aware of the constraints imposed on them and enforced by PACE trial believers, that are more akin to a cult than a guideline for health. This should never be allowed to happen. Doctors, not allowed to treat and support patients with known helpful treatments like Vitamin D? Or ask for tests, this is outrageous in any civilised society. 

NICE should denounce the PACE trial, it is a flawed study on so many ethical grounds that you are fully aware of. PACE has been used to control, demoralise and harm those it states it helps, insisting the term CFS is used with no legitimate reason. There should be a public enquiry and I am sure in the near future there will be. 

PACE has been based on the theory of “Mass Hysteria”, “Illness beliefs” and “spiritual healing”. This then alludes that NICE believes in Mass Hysteria and spiritual healing and forgoes science, and ethical treatment? Would parents be allowed this flimsy theory to deny treatments? NO!

The inability of a ME patient to process energy causing the body to shut down, is beyond doubt. Considering the body needs energy for activity, this then makes it nonsensical to give a patient activity as treatment, so therefore both GET and CBT are abusive, and could be construed as torture? Infections rise in many places including the gut after exercise, this has also been proven, along with lactic acid increase. The guidelines are untruthful and therefore should be overhauled and I am appalled you do not seek patients/care givers views, as they are the only ones who truly understand ME, and yet never get heard. Yet we are taunted at every turn, and left to defend against harmful treatment and misdiagnosis on our own. NICE is directly responsible for this.

NICE have allowed the abuse of patients and the demoralisation of disability, this has caused many suicides and clouded the reality of this condition, and stopped furthering the biological research that was happening decades ago. No records of number of patients, harms, changed diagnosis, or deaths are recorded, why is that? When this should be a matter of course.

There are no treatments for ME, which is inexcusable considering the physical evidence of disease. NICE should be open to all research and not close down the guidelines at every opportunity, only listening to one group of researchers that have a discredited theory or belief. 

The guidelines have been used against parents and FII is a constant battle for families, where the NICE guidelines have been used to harm children, which you are fully aware of. It is then left to parents like me and charities that have no connections with the PACE trial or FITNET, MAGENTA or SMILE trial researchers, to support those parents as best we can. 25,000 children harmed, is unforgivable. The Centre for Disease Control in the USA have now taken both CBT and GET out of their recommended treatments, and have made sure it is clear that activity that causes symptoms should be avoided.

The term CFS is a manifested term along with Unexplained Medical Symptoms, which holds no science behind them, and used to confuse the danger behind many conditions. This manufactured term leads to misdiagnosis, confusion and ultimately death. 

Many ME patients have co existing conditions like cancer, brain tumours, diabetes, kidney failure, EDS, PoTS, OI all left untreated because of the term CFS and the PACE trial, as it alludes to no harm of exercise and that the patients are just stuck in a cycle of thinking they are ill. 

As with the America you should at least take CBT and GET from the guidelines, not to do so would put further children in danger of lifelong harm and disability. NICE guidelines should DO NO HARM. 

This is an open letter and as before, a copy of which, I will be sending to Countess of Mar.

I have also attached my letter to my MP, which I will be sending today, and will be attaching this email also.

Many Thanks for your time

Tina Rodwell

My letter to my MP:

Dear Jo Churchill,

I need your help and support as my MP to guide me through how to stop false accusations of Fabricating or Inducing Illness, for those parents, with children who have Myalgic Encephalomyelitis (ME).

You may have heard the program on BBC radio four, 1File on Four about the way parents are treated, or the question being asked in the 2House of Lords by the countess of Mar? It is very frustrating to see the House of Lords frame a question about ME in the context of Medically Unexplained Symptoms. ME is not Medically Unexplained Symptoms, It is underfunded, lacks a test, and inappropriately treated but not medically unexplained, the history and research from all over the world shows you it is not dissimilar to Type 1 diabetes, most sufferers also have unknown aetiology.

There are many adults who like my son, where given Graded Exercise Therapy (GET) which took away their ability to live a normal life physically, and Cognitive Behaviour Therapy (CBT), which took away all of their self-esteem and belief in self. If the first program from the same reporter 3 Matthew Hill “Sick and Tired” 4 1999 featuring Ean Proctor amongst others. In 2009 he explains what happened to him. Have we not learnt to listen to the children? If these experiences had been adhered to my son would be at a much better physical state and safe? Who knows living a normal life. Uan Proctors experiences are being relived in 2017. How have we let this happen?

ME is classified by the World Health Organisation as a neurological condition and is a disease of the Central Nervous System G93.3. You would never know this as most Doctors are ill-informed or given the wrong impression, and treat sufferers as mentally ill. This is both harmful physically; as the wrong treatment is given and psychologically; if you are asking from your body to do more than it can permit, you are left demoralised and feeling inadequate.

From the age of eight my son has suffered at the hands of this misinformation, and was inappropriately given CBT and GET, through the NICE guidelines as many are, 25,000 children are treated this way and no number collated unlike other illnesses. Doctor’s lack of understanding is partly due to misinterpreting the NICE Guidelines and my son slowly went from 70% function to 5% Bedbound. NICE are aware of the situation and have been for a very long time, and I feel if they had taken notice of the patients, then my son would have been saved the horrendous behaviour from the medical profession

NHS, who I have written to, along with NICE have dismissed many parents in my position. ME is one condition they do not allow the sufferers or carers to have a say in the guidelines, or in treatment; which surprises me due to lack of research and funding, our experience is of paramount importance? For decades we have been dismissed, this has to stop. Like the Grenfell tower our voices fall on deaf ears, and I ask at what cost to our country?

My son at the age of eight was told to take responsibility for his illness and recovery, not to talk about symptoms. He was also reminded many times; and in my view inappropriately, that I had to give up my job to look after him. Many times I have held him racked in pain, as he sobbed his apologies, wondering how the medical profession got so inhumane.

I was never listened to, or supported. Later we found out my son has celiac, PoTS, OI and hypermobile joints, all of which impact on his ME, and the symptoms of which they told us to ignore. He is not deconditioned his body has failed him, you could see his decline in a matter of weeks. He was active and then he was very ill. He is not avoiding exercise, for when able he runs like the wind, breaking free for a short time from his constant pain, dizziness, sickness, swollen glands like conkers, every joy comes with a “payback” Post Exertional Malaise (PEM) an inability to repeat exercise. It is quantifiable and testable, and for which a group of researchers deny and lack the ability to understand. He is not “fear avoidance” he grabs life by the throat, but laughing can send his HR into 200 beats per minute plus, this then takes days for his BP to settle back down, and like anyone oxygen staved, the consequences are severe.

I have witnessed him have hypoglycaemic like attaches, similar to those my Nanna Ann used to do before her diabetes was under her control. I have nowhere to go, because of the constant threat and real fear that any negative test, whatever they are, and who ever has asked for them, would probably put us further under peril of not being believed I can assure you it has been the scariest of times, for when you hold your child, concerned over their physical health with nowhere to go, and no idea what the end result of this severe episode will be - this is the relentless place I find myself in. Imagine having a child with diabetes and no one understanding the condition, worse still believing it is one of avoidance of life, and not the physical illness it is. Imagine the damage done to such a child not being given insulin when needed, due to lack of research into the illness. Told to exercise and control their symptoms with relaxation technicities that just don’t make sense of what you witness them physically going through, and you will get a good understanding of how I feel on a daily basis, on my own, with no support just ridicule.

They are working on how the ME patients bodies use energy, and what causes the many differences they find in bloods, cells and DNA, but because of the complexities and for many other reasons, as yet they have not found a good enough, or cheap and easy to do test to enable patients to regulate their energy levels, or doctors to confirm diagnosis. More than nine biomarkers are waiting to be funded.

Many mothers like me are forced to hide in silence. We hide because we are blamed, to get us off lists so they do not have to report harms or the worsening of condition after treatments or on trials? Over 200 parents have gone through FII, none have been charged with Fabrication or Inducing Illness. That fact should say, all there is to say, about how parents are treated when they have a child or worse, children with ME. But there is worse to come. We are called MUPPETS by a leading Paediatric in the CFS field, who researches a denounced psychological theory of “perpetuating illness belief”. This research has to stop, a data exercise should be undertaken of all children with ME to find out how many are house or bedbound, this will show the harm done by GET and CBT, as all children are forced to go through this treatment. A recording of all parents accused of FII when they have a child with ME should be undertaken. All government organisations refuse to collate numbers?

Researchers seem able to deny any research that shows how harmful over exerting can be. When they are challenged or asked questions, those that put forward those questions are called saboteurs or militants, however world renowned they are. We know the smearing that goes on behind our backs by some Doctors, Researchers, and Professors that have closed seminars, Universities and mental health professionals. Still we mothers do not buckle, we stay strong, supporting each other and we learn.

We learn how to handle the medical fraternity; we learn how to tell hospital staff when our children fall ill with chronic pancreatitis, kidney problems, cancers and many more co existing illnesses. We support the medical staff when they are at a loss what to do for our very sick children. We hold them as they crumble with no true information about this common illness, and as they realise they have been fed the wrong social landscaping, we teach them how to cope. Many good doctors are hounded by others when they support parents, this has to stop?

We hold each other, protecting each other, and supporting the best we can in educating the medical profession as our children slip away into the abyss of ME.

25,000 parents know the pain of ME, 25,000 children suffer in quiet dignity the humiliation of being told they are not ill like cancer patients, and they do not deserve medical help or support; yes that is said often in 2017 to our children. With over 9000 papers logging all the physical problems and testable differences of ME, with little to no funding in taking those possible biomarkers further, or replicating solid biomedical research. UK has done very little to none existent purely biomedical research. You cannot find what you are not looking for?

We shake our heads in disbelief when ethics committees pass yet another exercise research program that point the finger at parenting rather than the illness, knowing if diabetes did not have its blood test they would be treated just the same; exercise the symptoms away, change your brain function by positive thinking?

I need you to supporting me, to get ME recognised throughout Suffolk and the rest of the UK as the illness that it is; a complex one that effects every cell and system in the body, so that Education, Social Services, GPs and Paediatrics do not keep making false allegations of FII, and those that keep doing so get educated in the seriousness of this complex and chronic illness.

Then we need to give parents, carers and sufferers the correct information so that they can be supported through their child’s disabling illness, and find the best way forward with managing their child’s symptoms and condition, without fear, until such a time a robust biomarker has been funded and treatments can be tested against.

I have enclosed and email that I have just sent to NICE. They were due to change the guidelines to take out CBT and GET, but have now refused. It is worth noting that the Centre of Disease Control in the US have changed and have taken out GET and CBT as treatments, and noted that any activity that causes symptoms should be stopped.

I look forward to hearing from you as soon as you possibly can make it

1.       http://www.bbc.co.uk/programmes/b08vyly5

2.     http://www.meassociation.org.uk/2017/07/countess-of-mar-and-lord-hunt-defend-mecfs-in-lords-debate-on-medically-unexplained-symptoms-05-july-2018/

3.       http://news.bbc.co.uk/1/hi/programmes/panorama/archive/506549.stm

4.       https://www.youtube.com/watch?v=cDeu_OlMivU&t=11s

Many thanks for your time

Tina Rodwell

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

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?

The Joy of Her

A while ago a very dear friend wanted some help writing down a story that contained her thoughts. She had cared for her mum through her illnes and as often happens when someone you love and depend on leaves you - so many emotions curl you up into a tight ball of sorrow, called grief.

Like the roses here (taken from Pearl's garden) as the tight buds opened up the beauty wrapped within the flowers uncurled, you could see the love blosom.

The Joy of Her

I see the joy of my mum in roses, her gentle ways, the way she wrapped us up in petals of love but I don’t think she knew how to nurture us as she nurtured her garden. I think that was our gift to her.
 
She was brought up in a time when no encouragement was deemed necessary I suppose, but it would have been nice to have heard the words ‘you did good!’ I sort of took it personally until I decided to plant the rose bush in celebration of her joy. I got to thinking; which is probably my problem of over analysing life, it’s the times we live in I think. We have to be accountable for each action we give a child these days, not the same for mum. She just wanted a family, it was enough and I guess we didn’t have to achieve to make her happy and being proud just wasn’t her thing, giving love was more my mum’s style.

As I dig the hole to bury the strong roots of the rose bush I have chosen and as I look at them I see my foundation from which my family has grown. Each branch strong and sturdy with shoots of beauty ready to flourish if I tend to them. It was then I understood why she loved gardening and arranging flowers so much. Lovingly you put everything you have into it, and at a distance – you admire. With us it was the same she watered and fed us, our every needs were met, and not until now – as my hands feel the earth have I given it a thought. She nurtured her grandchildren because she could not love them as she had us. She had to stand back and enjoy her love blooming through us to our kids. God I hope I can learn that lesson – how to back off and let my boys grow, enabling them to find their own roots so they too can bloom.

She had an acceptance in life that many of us take a lifetime to try to achieve, scholars spend decades trying to reach the Zen like state she found so easy. I’m not sure how deep the resentment of that quality goes actually. She had a profound inability to tell us off as children, I saw it as a weakness that always ended in laughter. Through her illness – that took her away from us bit by bit, she refused to try to understand it. That simplistic acceptance made me so angry at times. I now see it as a strength I envy.

Cooking, being with her family, holidays to Portugal, playing cards was her enjoyment but it was the looks and words she gave her grandchildren that was her joy. It’s what I miss the most and as I stand back and look on at all the rose bushes that glisten in the summers rain, for the first time I can see my glory. So why am I so angry? I have so often thought about this while in my garden tending my flowers and I think it was because I never told her or allowed myself to see it…. that I have finally seen and understood what she saw so clearly…. my beauty.

To Pearl and her family

X

I hope you  agree she did 'do good' and I'm very proud of her. Lots of love