GMC Send Their Decision. It made no logical sense to me. Does it to you?

So on the 9th of February 2018 I sent a letter to the GMC in support of Dr Myhill's complaint.

I am not a Ms and the last paragraph I really object to, which I have addressed in my reply which I address in my next blog.

They say they oversee medical education... Err research forms medical understanding and education?Or am I missing something here?

Dear Ms Rodwell

Thank you for your correspondence sent via email which was received by the GMC on 9 February 2018, addressed to Sir Terence Stephenson. Your concern was passed to the Fitness to Practise section to look at the issues you had raised. We have now reviewed all of your correspondence, including the original concern from Dr Myhill.

In considering your concern, we looked at the doctors who were involved in conducting or publishing information relating to the PACE trial, who hold current registration with the GMC.

After careful consideration, we have decided that we will not be taking the matter any further at this time. We’re sorry if this is not the outcome that you were hoping for.

Concerns about staff involved in the PACE trial who are not registered doctors

There are a number of other researchers listed as authors of the PACE trial. However, as an organisation the GMC can’t investigate concerns which do not relate to registered doctors.

Our role

Our role is directly related to the registration of doctors. Our responsibilities are all connected to keeping the Medical Register. We oversee medical education; we give entry to the Register for those suitably qualified; we advise on good medical practice while registered; and we remove or restrict registration in response to fitness to practise concerns where there may be a risk to patient safety.

An investigation can only be opened if the concerns raised are so serious that the doctor’s fitness to practise medicine is called into question to such an extent that action may be required to stop or restrict the way in which they can work to protect future patient safety.

The purpose of an investigation is to determine if or to what extent we need to restrict the doctor from working. We are not a general complaints body and we have no legal powers to intervene in or resolve matters for individual patients.

Reasons for our decision

We are aware that many people have strong views on the PACE trial and concerns about the way the research was conducted, collated and published. As an organisation we don’t have any involvement in setting standards and protocols for clinical trials. However, we do appreciate that there has been significant academic debate about the trial and its methodology and that a number of criticisms have been made. We have reviewed an extensive amount of information about the concerns raised, before making our decision as to whether we can investigate.

In addition to all of the relevant documentation submitted to the GMC raising concerns about this research, we are also aware that there was a Parliamentary debate held on 21 June 2018 which discussed the matter of treatment and research relating to myalgic encephalomyelitis, in the UK.

Our considered view is that these concerns are part of an ongoing academic and scientific debate, rather than matters which would raise concerns about an individual doctor’s fitness to practice, in the absence of anything which demonstrates that they had acted dishonestly or with intent to be misleading. From the information provided, we haven’t identified any issues that would meet these criteria. As an organisation, we wouldn’t be in a position to comment on the research framework of the trial, and whether this was fair and robust, as this is outside our remit.

Whilst we do understand why you have significant concerns about this research and the impact it has had, overall, we are not of the view that this would require us to open an investigation with a view to restricting the medical registration of any of the doctors involved in carrying out this research.

Concerns about the standard of care provided

In your correspondence you have said that you are the mother of a 12 year old child, who has had ME since the age of 8. You have said that you were not given sufficient information by your son’s GP to allow you to consider the various treatment options available and you are concerned that appropriate investigations for your son were not always followed up. You have advised that your son also experienced severe headaches amongst other symptoms, however, you consider that the possibility of him experiencing migraines was not then discussed and investigated fully. You have advised that your concerns about his treatment were often dismissed, and you were made to feel irresponsible for wanting to discuss his treatment in detail.

You have said that your son was sent to a multidisciplinary team and advised to have CBT and GET. However, after having this treatment you found that his condition declined further. However, when you tried to raise your concerns about these matters and in relation to the issue of Post Exertional Neuro-immune Exhaustion (PEME), you said your views were dismissed even though his symptoms had become worse. You have also raised concerns about the delay involved in diagnosing your son as having coeliac disease. We can see that you have also found that you were not given sufficient support to help manage his pain and discomfort.

We’re sorry to hear of the difficulties you and your family have experienced. We appreciate that many ME and CFS patients might have had a negative experience in the NHS, and that they have concerns about the way their condition is diagnosed and managed. We don’t wish to undermine these concerns in any way, however we’re not able to look at the overall care a patient has received, only the issues raised about specific doctors. In addition, we can’t investigate concerns about the availability of funding or services available from the NHS. It’s useful to remember that we can only open an investigation where we’ve decided that we may need to place some kind of restriction on the doctor’s practice. We don’t have any powers to intervene in a particular patient’s care, or recommend a particular treatment or that a referral should be provided to a patient.

We do expect doctors to be respectful to patients and their families at all times. Whilst we’re sorry to hear about the attitude of some of the staff involved in your son’s medical care, issues such as you have described would not usually be a matter for the GMC to investigate as a medical regulator. However, you can of course complain about these matters to the relevant healthcare provider, if you’ve not already done so, to allow any concerns to be addressed at a local level.

We‘re aware there is a broad spectrum of opinion both among patients and doctors as to the correct method of diagnosis for people experiencing ME/CFS, and the way the condition should be managed. We also know that patients are individuals and respond differently to treatments, and as a result there is no single way of managing ME/CFS which will work for everyone. As an organisation we’re not able to get involved in endorsing or recommending particular methods of treatment, or endorsing particular theories or research about the illness, as this is not part of our statutory role.

We understand that there are concerns about the validity and quality of the guidance relating to patients who have ME/CFS which is used by other organisations such as the NHS and NICE, as well as non-health care bodies, like the Department for Work and Pensions and various insurance companies. We don’t have any role in regulating social security policies, and aren’t able to intervene to tell other organisations to amend any current guidance documents which they use. You might wish to raise any concerns you have with the relevant body.

If you feel that any GPs or consultants have failed to treat your son on specific occasions then this should be raised with their employers at the GP practice, NHS England or with the relevant hospital trust directly in the first instance. Local organisations are usually better placed to look into these types of issues and can provide explanations and offer apologies if this is appropriate.Thank you for bringing these matters to our attention. We hope this explains the reasons for our decision and the kind of issues we are able to look at. We’re sorry we cannot help you further at this time.

Yours sincerely

Ian McCann

Complaints and Correspondence Officer

On behalf of the Assistant Registrar

Fitness to Practise Directorate

Direct Dial: 0161 923 6344

Email: fpddecisions@gmc-uk.org

9^th February 2018

Sir Terence Stephenson,
General Medical Council,
Fitness to Practise Directorate,
3 Hardman Street,
Manchester,
M3 3AW.

Dear Sir Stephenson,

I am writing to you in support of Dr Myhill’s complaint against the PACE trial authors, due to their flawed research, inability to understand good conduct in science, and as professionals within the healthcare system.

They have knowingly and wilfully dismissed the evidence of biomedical research. Made persistent attempts to make sure the only treatments offered are their own. Their beliefs and their power have stopped nearly all biomedical research in the UK, discouraged new researchers in this field by putting undue pressure on researchers through various means, including inciting hatred towards Myalgic Encephalomyelitis (ME) advocates, and the sufferers.

Made vicious claims and attacks on the researchers, advocates and doctors who support the sufferers of, biomedical research into ME (Williams, 2013).

Withheld vital information from the medical professionals about the true findings of the PACE trial, to enable proper consent to treatment. Taken away choice form sufferers and their carers. Taken away from severely disabled people; including children the ability to have wheelchairs and disabled badges for cars, without suspicion of fabricating their illness, or that by offering such devices somehow this is going to have a detrimental effect on their progress. Taken away the ability to have any second opinion.

Wasted millions of taxpayer’s monies, and resources from the NHS, knowing their treatments do nothing, worse still are passive aggressive in design. Their actions are more akin to a mafia gang, than that of esteemed professionals.

How this group of health care providers can go against the Helsinki agreement in regard to the PACE trial, disregard the World Health Organisation listing of ME, going against all other independent medical opinion, with regards ME including, renaming and conflating diagnosis to that of depression with the Oxford criteria. Even after the case of Ean Proctor their manner with which they deal with children and their parents, have caused untold damage. Their ability to say what they like, is well documented over decades. Holding a different opinion would show an ability to accept the findings of the trials they have undertaken, and other esteemed researchers including Nobel prize winners, but they do not.

I am aware that NICE are changing their guidelines, as I attended their Engagement meeting on the 16^th January 2018. After this constructive Engagement meeting a post popped up on my Twitter feed Professor Sharp who attended the engagement, liked a comment which is appalling. “CFS/ME: Swedish couple lost hope, kill their children, commit suicide. Why? In part because of the intense negativity spread by individuals/CFS groups/researchers, saying cause is bodily defect and nothing can be done. False. The children could get well!” Although Twitter is a personal thing. Yet again they slander concerns of the ME community, and turn a blind eye to research and cherry pick facts. Karen Hansen and many of our children in the UK pay the price of this attitude.

Yet still Kings College London with their Mental Health Skills for non-Mental Health Professionals (IMPARTS) show a distinct lack of understanding and respect for physical illness, and its part on the mental wellbeing of the suffer. Irritable bowel syndrome (IBS); just to take one of their Medically Unexplained Symptoms that they list with ME/CFS, can lead to great harm if misdiagnosis. IBS can be one of the symptoms for a disease that can be easily tested like coeliac, to others such as bowel cancer, but get misdiagnosed given wrong mental health treatments which results in bad outcomes for both.

Personally, their behaviour; as with the Proctor family decades ago, has had a profound effect on me, my family and friends. On my son it has changed his forever in many ways.

I am a mother of a 12-year-old, who has had ME since he was 8. He followed the normal pattern and one that is still allowed to continue, perpetuated by the PACE trial. I was given no facts to make any reasonable consent to treatment; he was given no investigational tests other than the normal blood test. This blood test revealed a problem with low iron, but the consultant dismissed this as unimportant.

Due to Sir Professor Wessley involvement in the 2007 NICE guidelines, interventions or treatments such as Vitamin B12, Thyroid, SPECT or special MRI scans not undertaken or the understanding the relevance of in this disease. In our area of Suffolk low Iodine is a problem, but this gets clouded over due to many doctors taken to GMC repeatedly, for trying to help with such investigations or treatments. (Rayman, Professor Margret al et, 2017) (Rayman, Professor Margret al et, 2013) Professor Rayman uses The Avon Longitudinal Study of Parents and Children (ASPAC) as mentioned in many of Professor Ester Crawley’s work. Yet all her research is on increasing activity with no other medical interventions and holds the same beliefs as Sir Simon Wessley and uses the PACE trial to support her work on hundreds of children. 

With a disease such as ME every little helps, unfortunately my son has a reaction to many shop brought vitamins, but due to the teaching of Wessley and his colleagues, all his allergies and Irritable bowel symptoms are dismissed. Healthcare professionals are only interested in anxiety and depression or school avoidance.

However, some medical professionals, healthcare and researchers are getting to grips with the importance of the microbiome of the gut. Their understanding has been held back by Wessley insistence that everyone should follow their belief systems into all physical illnesses such as ME, has a mental illness trigger. The reality is many chemicals within the body shoved out of kilter does influence your brain thought process. No amount of pushing through will mend that. Your moods can change with a Urinary Tract Infection (UTI) but without treating the infection you won’t make your moods better.

They also seem to get confused with the word stress. When you hold a heavy weight, you put stress on your body. You can be determined to hold the weight up to a point and then your body releases the weight. You cannot hold the weight beyond your physical strength indefinitely. It is the same with pain. They think they can determine how much pain is acceptable for a sufferer to endure.

Sir Wessley President of the Royal College of Psychiatrists and President-elect of The Royal Society of Medicine, according to Kings College is going to shape the future of mental health, this is very worrying (London, 2017). In the Joint Commissioning Panel for Mental Health, it once again made sure ME/CFS stays were no biomedical treatment will be given, and obviously does not accept the World Health Organisation that ME/CFS is an organic disorder and insists it is a functional somatic syndrome. This denial of biomedical treatment, is in violation of an individual’s ethical right to treatment.

Their actions to put ME/CFS as a functional somatic syndrome has endangered yet again anyone deemed “too involved” with their child’s illness. This includes any carer with an ME sufferer and at a time when NICE are changing their guidelines. This will be putting parents like me back under scrutiny of Fabricating and Inducing Illness beliefs (FII), the old term of Munchausen by Proxy.

Sir Professor Simon Wessley himself has used FII against children without a full physical examination or understanding the mechanics of the body. Has denied this involvement on various media outlets. Yet there was a court case and a commissioning group, and the reading of his behaviour through this case, leaves a lot of questions that need to be addressed as to why he still holds a high place within the medical fraternity. (Court, 1992). What happened to Chairman Miss Patricia MacManus report?

I therefore wonder to who’s best interests ME/CFS is put under functional somatic syndrome.

My son had been struggling after a tummy upset with headaches of new onset, repeated infections, low temperatures and high temperatures. I thought he had sinus problems. After having one of his spike headaches in the GP consulting room, the GP sent him as an emergency to hospital.

Migraines with aura are known and black spots are a common feature, when I asked about the possibility of migraine I was dismissed. These types of migraines are associated with neurological problems. This was not investigated, and no medication has been tried in the four years of my son’s illness.

That afternoon and through the night the medical staff were waiting on the consultant to authorise a MRI scan. The next morning the consultant heard the history and diagnosed with Post Viral Somatisation Disorder with multiple symptomatology, on his medical records but not the letter I was sent.

The consultant seemed to think I was asking for the MRI and made me feel this was an irresponsible action for someone like my son, who just needed to get over a virus.

I want to make this point very clear - I did not ask for a scan, my son was sent to hospital by a GP. This shows the attitude of the medical professionals - be mindful of over indulgent parents, give no tests, because this feeds into the parent’s beliefs of illness, as advocated by Sir Simon Wessley.

My son was sent to multidisciplinary team and put on Graded Exercise Therapy (CBT) & Cognitive Behaviour Therapy (CBT), without further investigations. At what cost to NHS and to my son?

The PACE trial and all the other such trials based on this, was not explained to me and I was not informed of the harms that can be done. (Caroline wiltshire, Tom Kindlon, Robert Courtney, David Tuller, Bruce Levin, Allem Matthees, Keith Geraghty, 2018)

“Patients have shown various physical abnormalities when tested 24 hours after exertion”

The PACE authors resistance to openly share the data has been appalling, harmful and discriminatory, especially when you consider tax payers money has gone into this trial along with the DWP, this then draws into question the ethics of not allowing patients voices to be heard.

My son’s team consisted of Paediatric consultant, Psychologist, and physiotherapist who dealt with hypermobile joints.

Following the CBT and GET regime my son was declining very slowly at first. I was questioned and interrogated by the multi-disciplinary team over my closeness to my son, my views on his illness, and that I need to encourage him to school. By a few months his decline was so evident 2-3 days after him doing any form of activity, but this was impossible to convey to the team. Post Exertional Neuroimmune Exhaustion (PEME) should have been taken seriously to stop further damage to his health. On some days my son would open the fridge and ask me “what is my name mummy”. He was blacking out, loosing balance and was in so much pain.

My son enjoyed going for a Pizza at a local restaurant, but this was getting too much for him. At his worst he thought his head was going to explode and would repeatedly ask me if he was going to die. How can you explain the impact of daily life to a team, when their treatment is CBT, where you must ignore all symptoms as heavily promoted by the PACE trial Authors?

If they had listened perhaps his diagnosis of celiac would not have taken over two years, and the damage done to his intestines would have been avoided. That damage reduces the body’s ability to absorb nutrients and vitamins. This was at such a young age and at a time he needed all the vitamins and minerals from his food, and all the support to enable him to recover. Furthermore, knowing that he was iron deficient in his first blood test should have sounded warning bells, especially when we were telling the team - his favourite meal was pizza.

We tried to explain he was very poorly after going to the pizza restaurant, he was not reluctant to go as they kept suggesting. They tried to convince us it was his way of controlling us. This has left him with a higher risk to lymphoma. The emotional impact of their insistence of their view of our son, has had long term consequences to his emotional wellbeing. The impact on us as parents, on his sister and brother on our collective emotional wellbeing has been immense.

When I asked for help with his increasing pain levels, I was assured that just by acknowledging his pain - by patting him on his legs, would suffice. I should modify my language around him, not acknowledge his symptoms, and to concentrate on his positives, using encouraging words instead of my anxiety. The fact it was his words and understanding I was using, was lost in their belief and understanding of a denied illness, perpetuated by Wessley and his colleagues.

I questioned the treatment and asked if anything else could help. I took in some information that I wanted to discuss. I pointed to the part in the Myalgic Encephalomyelitis Adult and Paediatric International Consensus Primer for Medical Practitioners, (International Consenseus Panel, 2012) about Post-Exertional Neuroimmune Exhaustion (PENE) and explained about his symptoms being delayed. I did not realise this was not allowed, or that it would put me under further suspicion.

The next time I went to the hospital my son went into another room with the physio, who till that point, I trusted. Previously she had explained to me about adrenalin rush, and the need to take every daily task as an activity, resting in between. At this point my son had to rest from putting on his socks, then putting on his shirt etc. He would become dizzy breakout in cold sweats, feel sick and he would explain that his world had gone black. So, her advice to me had made sense, I thought we were in safe hands and was grateful for her support.

I had taken my Sister-in-Law with me to that appointment, as I felt threatened, and she had witnessed my son’s decline. I also thought I had miss understood the psychologists attitude towards me. We both came out of the consultation even more confused, and alarmed.

The physio had encouraged my son to stand from a sitting position 20 times, and to catch a heavy ball. I had not been informed this was going to happen. He has never recovered from that day. He became bedbound.

My son had never been tested with Post Orthostatic Tachycardia Syndrome (POTS) even though this is well known to be associated with ME/CFS and hypermobile joints, in fact in 1986 Ramsey would diagnose ME on all my son’s symptoms. (Mavin, 1988) . Ramsay mentions that this disease can alarming become Chronic, so not to take great care around ME is to do great harm.

The diagnosis of POTS for my son took over three years. The damaged caused by this lack of diagnosis not known, but the build-up of lactic acid has been known for a decade or more with ME and well documented around the world. This should have been explained to me, as this increases with any activity and affects the gut and brain. Who stopped the 2010 revision of POTS on the NICE guidelines with regards to CFS/ME?

At this point they wanted to change the diagnosis, as children recover from CFS in 6 months to a year. All the allowed research by NICE would seem to suggest this, with media coverage of research by Professor Crawley emphasising this you can hardly blame the medical profession for believing this is true. But her research is based again on the same flawed methodology as the PACE trial. The conflation of Somatic, CFS on ME is the biggest problem here, not understanding the difference is very harmful.

They wanted to take my son into hospital for further assessment and rehabilitation, with little contact from me, so that they could re-educate him? Autism and other somatic disorders to do with pain were mentioned. As there was nothing wrong with his body, in fact they explained to me he enjoyed the exercises. The NICE guidelines stipulate that Heart monitors should be warn when exercising, and about Post Exercise Malaise, so why did they not understand my son’s exercise intolerance? (NICE, 2007) After all everyone agrees, any form of activity even thinking causes a rise in symptoms.

At this time, he had no further tests, even though I had tried to get them to look at the Paediatric Canadian Consensus Criteria, had marked all the relevant bits that clearly showed he was suffering from all the symptoms needed for ME, and had  left the booklet with them.  Or was it because I had done this, that they now questioned me?

They were aware at that time he had inserts in his shoes, due to musculoskeletal problems and he bruised easily. So why had they not tested him for a potentially life-threatening condition such as Vascular type Ehler-Danlos syndrome.

Why were the purple stretch marks on my son’s thighs and knees not looked at as potential signs of problems with his adrenal glands? As these markings are a sign of the adrenaline rush, the physio had told me about previously.

Why was not a Lymes test ordered, or thought of, yet again all the symptoms point that way?

Why was not sepsis thought of, with his continuing low temperatures. Since 2007 low sepsis has been talked about, and new research is looking into this also (Johnson, 2018)Cort Johnson overview of this is a good rounded piece.

All through this process I would explain, it was not that my son did not want to go to school, be with friends, ride his bike be free. It was the fact his body could not cope. My concerns about his health were ridiculed and belittled. Yet I am the one proved right with further diagnosis.

Many parents learn to protect their children from this passive aggressive behaviour of CBT and GET, as prescribed by the PACE trial. I would go so far as to say, it is the same as being asked to torture your child, many parents are left feeling this way.

Yet we are given no choice by the professionals due to the teaching of the group that is led by Sir Wessley, professor White, Sharp and Chalder. More importantly Sir Professor Wessley who determines allergies are modern day replacements of the devil, or a way of people being able to blame something on ill health, instead of taking responsibility, is allowed to cloud medical teaching and government policy, why?

The PACE trial has allowed other trials such as SMILE, FITNET, and MAGENTA to go ahead. These trials on young and vulnerable children are akin to grooming the child and blaming the parents. The evidence of this is the number of parents falsely accused FII. If they are taken to court, even if they are proved innocent, they are affectively gaged from stating the truth and are not allowed ever to work with children. It breaks families up and causes untold stress. This protects bad science and perpetuates the myths about CBT and GET. Making bad policies and guidelines. These treatments do not work in education, so how could anyone assume they would work with a multi system disease such as ME?

At no point have I been supported or given empathy. My life has been taken from me, I have seen as Mrs Proctor had all those years ago my child decline in health, unlike Ean my son has not made a recovery as yet. I have been accused by all sorts of outrageous and offensive behaviours, and no one bats an eyelid at their consequences to me as an individual. I have not formally been accused of FII, that does not mean it is not on my, and my son’s medical records.

It was when I heard Henry Wolsey words that I began to understand my sons condition “I have too shot my bolt” He said when he could no longer put one ski in front of another. Henry died on 25^th June 2016 of complete organ failure due to a stomach infection that they could not treat. On the 23^rd June 2016 Maureen Hansen finds a possible biomarker for ME, with infections in the gut (Hanson, 2016)

Many sufferers with ME die of acute organ failure and looking at my son’s physical condition I would say that it is credible and provable. Furthermore, you do not have to look too far to see the evidence from here in the UK, Australia and the US all around the year 2005, and yet autopsies to find ME are stopped why?

Parents are left afraid to complain, are silenced by courts. I could not go to PALS to log a complaint to stop this from happening to others, I was advised not to. Looking to seeing what happens to Whistleblowers, and my previous experiences, and those of other mothers that have tried to complain, they were right to advise me not to.

Parents cope with all the illnesses within ME, and they learn to fight for their rights. They do not go to doctors for help, there is no help or understanding, it has been eroded by the PACE trial.

To question yourself over your beliefs and the way you parent is not an easy thing to do. To fight against all your instincts to keep your child safe, without any scientific justification is wrong, and harmful to your wellbeing. You are left in utter conflict, turmoil and self-doubt. At this pivotal point you can do many things, for me I calmed the rising panic about the multidisciplinary teams accusations, and viewed the facts.

1.      Would my son be better off without me? Yes; if they accused me of FII and took my son away to rehabilitate him.

2.       Do I believe ME is a physical illness? Yes; there is simply too much evidence including autopsy’s reports to be in any doubt, too much research all pointing to Ramsey diagnosis of ME.

3.       I know that Thyroid, Celiac, Urinary infection and lack of vitamin B12 can all have a profound effect on emotional wellbeing, so Wessley and the PACE trial authors theories about illness beliefs, just don’t add up.

4.       Am I strong enough carry on defending my son? I have no choice.

Medical professionals have taken an oath to do no harm. They could not possibly do this to children if they thought it was wrong.

If there was proof that this was a physical disease, they would not use such passive aggressive methods to control you, and groom your child into thinking that it was your fault that they stayed ill, would they? Should they use these methods at all to anyone, let alone very young and vulnerable children?

Governments are there to serve and protect the people, they have set up things like the GMC and NICE, they would not let this happen.

These false understandings are what we fight daily. This could never happen in the UK 2018? We had the mad cow disease, AIDS and the blood contamination scandal, Ean Proctor, not to mention Shipman, we have learnt our lessons?

In 2004 there was an interesting study by Peter White al et who has close working ties to Sir Wessley, Department Work and Pensions and insurance industries, it showed that TGF-a and TGF-b were elevated after exercise (Peter White, 2004)

"Finally, we found that exercise induced a sustained elevation in the concentration of TNF-α, which was still present three days later, and this only occurred in CFS patients." 

"The causal mechanisms involved and the direction of the relationship between these mechanisms remain to be elucidated. Altered cytokine balance, for example, following an infection, may modify the threshold at which cytokine release occurs with exercise or activity, setting up a vicious circle. These processes could contribute to the post exertional malaise, myalgia and the central fatigue that characterize CFS (1, 2, 4)." 

TFG-a has been closely linked to kidney failure for years now, and I am sure in 2005 Sophia (Wilson) death could have given vital information to biomedical research. For some reason it is never mentioned. I do wonder what the other information we would be gleaned, if other autopsies had been pieced together over time with the knowledge we are finding now from new research.

TFG-b in things like cleft pallet and abnormal lung development are being researched to why was this paper not shared or highlighted. Why was this paper put in the bottom draw?

My son was later diagnosed with hypermobile joints (they don’t diagnose EDS because that sticks a label on him?) Coeliac, and PoTS. All of these conditions are constantly questioned by this group of practitioners involved with PACE trial. As time goes on his joints are becoming more supple and pliable, no one takes notice or evaluates this condition.

It is clear Sir Wessley cannot diagnose any condition consistently; you only need to look at his Camelford water poisoning paper and Gulf War syndrome theories, along with the case of Ean Proctor to see that. (Williams, 2013)

“in the words of Professor Martin Bland, one of the UK’s leading medical statisticians, it is important that false information should not remain on the record to be quoted uncritically by others: “Potentially incorrect conclusions, based on faulty analysis, should not be allowed to remain in the literature to be cited uncritically by others” (Fatigue and psychological distress. BMJ: 19^th February 2000:320:515-516). Wessely’s “incorrect conclusions”, however, remain in the literature to be cited uncritically by others and therefore may result in iatrogenic harm.”

Yet his is the leading voice in ME/CFS behind the scenes and him and his wife influence the BBC and he has now been asked to do a review into Mental Health, against great and esteemed opposition. How does that happen?

I am also aware of what could happen to my son if he has the more serious form of EDS. An acquaintances daughter bled to death due to this condition, yet still the same people that believe ME is an illness belief, think that EDS, POTS is MUPPETS - Medically Unexplained Physical Psychological (ET) Symptoms.

I have had to fight hard and tactically to get those three diagnoses, that to me are the important ones. I have lost all trust in doctors and the system. I dare say there are more medical problems to investigate, but I have learnt from bitter experience to stay away from doctors and hospitals.

I am in regular contact with mothers who, like me have no place to go, with children poorly diagnosed, given the wrong treatment and forced into harming their children by paediatrics, hospitals, education, Social Services, friends and family. We live in constant fear for our children.

It is the physical and emotional harm on my son though that astounds me.

What evidence do I have of the harms, none because children with ME are never taken seriously? I do wonder, however if the appropriate scan was performed what repeated damage they would find. What damage has been done to his organs? How much damage has been done due to the release of TGF-a and TFG-b on his body. What infections he has within his gut. Is his mitochondria working does he have Mass Cell activation? What has happened to hypothalamus and his hormones, thyroid? The list is endless, because ME is endless. I have learnt to do the best I can to cause no more harm and support my son.

I can however tell you of the harms done to his wellbeing and emotional state, and the impact on his life. It has been catastrophic, eroded by such things said to him like “You don’t need that wheel chair you are a big strong boy” when his legs would collapse underneath him, “you do realise your mum had to give up her job because of you?” all at a time when his normal life was slipping away from him, with no explanation, understanding or empathy.

The GMC, the government and the medical profession, but 

mostly the PACE trial, have ripped my son’s belief in his *self* apart. He is just one of the growing numbers last counted over decade ago, at 25,000 children in the UK. Over 200 parents falsely accused of FII; numbers not known or counted, and many more that have narrowly escaped due to asking themselves those questions at the pivotal moment as I had, calling on those brave doctors who are aware of the consequences to them, protect our children as the state and all the medical profession should do.

He will never be that boy who used to let the dogs out of my backpack and hold them on his lap as we bike to school laughing. I will never again see that boy that never walked when he could run, never run if he could climb, the one I was confident that one day would fly to heights that he dreamed to live up to. That time in his life has gone

How can a child be robust enough to cope with the treatment as prescribed by Wessley, Sharp, White and Chalder?

PACE with its form of CBT and GET, as Trudy Chalder teaches shows how far they allowed to go with regards to the wellbeing of children in their care. (williams, 1996)

In a letter dated 22^nd November 2003, the mother of a young man severely affected by ME wrote:

“The consultant in charge wrote to Dr Wessely for advice. On my son’s hospital file is a document dated 07.03.01, a “Draft Action Plan Proposal following consultation with Trudie Chalder”.  I find the action plan shocking, and I was particularly disturbed by the penultimate paragraph, which states: 

“We expect (her son’s name) to protest, as well as the activity causing him a lot of pain.  This may result in screams….it may feel punitive”. 

When I hear the recording of Sophia being forcefully taken away from her home, and read her letters, as a mother I ask the question how has society let this happen?

Sophia’s case: what was found as one of the causes of death was acute anuric renal failure, ie. a very sudden onset of lack of output of urine arising as a result of ME/CFS. 

This is years after Ean had been brought to the attention of the Queen, who had passed on the information to the Secretary of state for health. So, it has been known how children were being treated from as far back to 1986. (Proctor, 1989) Ean asked his parents "do I have to die to prove how ill I feel?" This has not changed in 30 years

But we have all let this happen. This situation has have taken my son’s dreams and crushed his body.

He will say often to me “Don’t ask me how I feel mum, I have to deal with it. I don’t want to look back it hurts too much; I don’t want to look at the future, because I know people don’t believe me. I want to live for now, so I can be happy now.

That is what they have left my boy with, and my family now must live with the consequences of that.

Yours Sincerely

Tina Rodwell

Open Letter to Richard Horton of the Lancet gathers more names

I cheered every name on this open letter and was wondering how much longer do we have to wait before the right thing to do, is done?

I also wished I had enough funds to take them all to court. The lives ruined because of this shameful research would be striking.

If you laid all the people and the children with ME hand in hand; lying down obviously, they would stretch around the world. The whole world is affected and touched by this illness, and none of those that suffer get the help they need or deserve. This huge falsification of facts that has led to a myth, that has harmed all those people around the world, needs to be taken down.

When you go to court you have to have an idea of the compensation you would ask for if you win the case and this also got me thinking.

Motivational speakers insistently talk about the little things and taking control. Well let me tell you that the little things that count in life are not valued. I would be laughed out of court if I asked for compensation over picnics with my family and our dogs. But it is those picnics in these last few years that I have missed the most. Picnics at the seaside; playing games on the sand, at woodland areas with bikes, in the back garden with family and friends, we have missed them all. The only place my son can have a picnic is in our home.

What the motivational speakers don’t tell you is, that sometimes when you do the smallest of things it can feel like a smack in the face with wet cold and smelly fish.

At 8 my son found it funny - having a picnic in the house on rainy days. He became so unwell he could no longer laugh at my funny ideas. At 13, my son would feel as this small attempt at gaining something he has lost, as a smack in the face with that large smelly fish.
In my mind I hear the words of William Shakespeare spoken by Emma Thompson, in the way she played the scene from “Love Actually”.
LV sonnet

“like as the waves make towards the pebbled shore,

So do our minutes hasten to their end;
Each changing place with that which goes before,

In sequent toil all forwards do contend.”

I think of all those people, researchers, doctors and sufferers that we have changed places with, as well as the time that comes crashing in on us, washing us out to sea. What compensation would ever replace that time lost? Of those memories we should be able to cling onto in times of hardship or when our time has come?

I think of all those yet to come that need not suffer as we have had to. I think of all the money lost on follies of empire, that has been built on the good name of our NHS, and it makes me SadMad.

The control of this is yours Richard Horton, now cometh the hour, cometh the man. For it is time to stand firm with the need to do the right thing, not just for our people or our country, but all those around the world.

Most of all Richard Horton stand forward for science and its good name.

You can see the Open Letter that David Tuller is committed to here

http://www.virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/

Third video of PAINSS explains how Activity impacts on Severity and incr...

What would you do if your child had a chronic illness

My Special Educational Needs and Disabilities - written submission

I very much appreciate that you have invited the parents to write in with their lived experience. I hope in the near future you will have an open and full dialog with parents and their children. Children can and do speak eloquently of their reality and professionals grasping their understanding is of paramount importance. They should be closely listened to.

I would first like to explain how we as parents are treated. We are viewed with suspicion, and we are mercilessly gaslighted. Fabrication and Inducing Illness is being brought in across the country in education, we seem to have forgotten the cot deaths in the 1990’s, this accusing all by untrained professionals will have a massive impact on society and family life in the UK.

Mental Health is in disarray, with a lack of understanding of cause and effect. Misdiagnosis of many physical conditions and or lack of vitamins and minerals for a lot of different reasons; such as celiac disease can have a profound effect on a growing brain and body, but on average takes 13 years to get a diagnosis. We need physical cause ruled out before mental health is thought of because of the problems it causes children when misdiagnosed.

If you look at the way dyslexic children have been treated along with those who have autism, and still are. Autistic children are seen as behavioural problems/Mental Health problems and not as a different viewpoint from the norm. They are given medication that is not needed and very little support within school or society. Now they are taking that understanding of diagnosis away, so therefore they will be seen as? Disruptive normal children?

With a diagnosis come support and understanding and great things can be achieved. It is the mindset of education and Government officials that needs addressing with regards to “labels”. Giving people a “label” is understanding their needs.  Have we not learnt from Christy Brown (My Left Foot Fame), are we now just turning back time on disability?

Being profoundly dyslexic on bad days and just about able to read and write on good days, I was applauded at the lack of understanding of the needs and cognitive processes a person like me must go through to read the simple Lady Bird passages. All three of my children are dyslexic and nothing in reality has changed in nearly 40 years since I was at school. Fighting an educational system that would rather gaslight then support. Trust is gone, what authority says, preaches and does are very different things. They delegate responsibility onto others, giving no power to enable change in outcome. In other words, they talk a good walk, but cripple those that have to walk their talk.

My two eldest have been supported by me to get them to University, yet the school take the credit. No notes are taken of the extra measures I put in place, so no understanding is achieved. Both my children have had lack of understanding of the emotional trauma a school brings down on them when they were unable to keep up with their counterparts. The teachers often were frustrated with their progress but did not have the capacity to listen and act upon the information they were given; not just by me.

Ofsted do not look for the support and understanding of the curriculum with regards to children with Chronic conditions. When in chronic and unrelenting pain there is no capacity to learn, no headspace for anything other than how to breath and meditate your way through.

Physical health is not looked at as a possibility when I first came across SEND

My youngest son became very sick at the age of 8. I received no support, empathy or allowance for the fact he had multiple infections, and multiple conditions. The Educational authorities are aware of the pressure doctors are under, and yet I found both medical and educational professions fighting to delegate responsibility. Furthermore, they expected me to understand their jargon, the way they worked and what they needed from me.

All organisations are only too willing to bring my ability and hold me accountable for their failings.

I had to find out all the information myself and am used as a go between; an unpaid employee that they seemed to think they needed to give very little regard to. To find the information took me about a week of tracking down who is responsible, then I found I had to adapt all forms to fit a physical disability and not anxiety as a school refuser. I have two arch lever files of letters written to gain support from medical and educational staff. All at a time of unbelievable stress trying to juggle all the needs of others rather than concentrating on my family and my very sick child.

There needs to be a full review with an honest reflection of diversity of disability (including invisible disabilities caused by long term chronic conditions) and educational needs. Painting a true picture of the child as an individual. At the moment; it is more of one size fits all with a defernite leaning towards school nonattendance that is put down to refusal as the fault of parenting.

Forward for ME parliamentary Group, Chaired by Countess of Mar have minutes of meetings dating back from 2009 with regards to education for children such as my son with the invisible and Chronic illness Myalgic Encephalomyelitis (ME). Along with Jane Colby of the Tymes Trust (a former Head Mistress) they have tirelessly strived to achieve the proper and appropriate education for children with ME. The Tymes Trust has excellent information, experience and support, both need to be listened to. Yet, in my experience you can give the information, but if the Educational establishments do not want to listen it puts parents and ultimately their children in a very difficult position.

However, I have been lucky with the support of Tymes Trust, once a home tutor was put in place I found their ability and experience to work in harmony with my child has been exceptional and should be celebrated, understood and promoted as part of the gold standard of any educational system.

We should be proud of those that achieve against all obstacles, and not those that achieve through good luck, good health and fortune.

#ME Has a Long Recovery From Having Fun

My son turned 13 last month and like all 13-year-old he was excited. We were going away for the weekend to celebrate and he was looking forward to quadbiking and trying his hand at cross bow.

Unlike most 13-year old he had been in training for the excitement, travelling and hoping he was well enough to achieve his goal of riding free on a quadbike.

With that careful training like an Olympic athlete he was in good shape, feeling good and up for the challenge. The quadbiking lasted around 45 mins and he was amazing.

Unlike normal 13-year old when he got off the quad bike he could not speak or move his legs and was in immense pain all over his body, my son has Myalgic Encephalomyelitis (ME). His recovery will be long and painful

ME is an invisible illness that effects every part of his bodies systems, leaving his body exhausted and in a state of shock every time he tries to live the life he had. ME has been abused and the only real research in the UK backed by Department of Work and Pensions, has been shown to be fraudulent. Many universities around the world use it as an example of how not to conduct a trial. Yet the NHS England still defend it and the Lancet refuse to take it down. It would appear like Windrush peoples position is more important than integrity and truth in the UK.

Unfortunately, my son could not attempt the crossbow as his body had flared so bad, we knew he had to spend the rest of the weekend recovering.

His dad went home on the Sunday took his sister back to university. Angus needs quiet and calm in order to recover. He hates quiet and calm, it is not in his nature to be still, this does not help with his recovery. Even though his body flaring is a common occurrence it is still a shock for him to go through and for me to deal with.

We have no medical help and even though there are many things that can help to alleviate the flare Doctors are unaware due to the misinformation and the voodoo research that has been allowed to continue. True biomedical research that has never received any government support or funding.

How long will it take him to recover from this much enjoyed weekend? Who knows, the scary thing is he may never recover. Why does the ME body go through this Post Activity Increase of New Severity or Symptoms (PAINSS) is the key to finding what ME is but as yet the Government have hindered all those who have tried to find out.

https://youtu.be/RP7xY_jlVTE

BBC Should Check Their Information

I have just had a reply from the BBC over my complaint with regards to their recent handling of the information of ME. This is placed at the bottom of my letter.

As always, they have not addressed my concerns and apparently the latest clinic evidence shows that mental and physical health is closely entwined. Not sure what they mean by that and they do not give the evidence ?

There should be a full enquiry into the professionals that gave the comments about treatment as they clearly do not understand their responsibilities of do no harm, neither do they understand this disease.

I informed the BBC of their duty to  report responsibly and with robust questioning. That CBT and GET  are dangerous for those with ME, as explained by the workwell foundation.

How many young people  in the UK suffer like Merryn. The Numbers are not counted of those that are ill or if they recover on treatment even thought there has always been great controversy?

Palliative care doctor stated at Merryn's inquest  "She was never really pain-free. She had incredible nausea which would not settle and had sensory sensitivities which made my job more difficult than normal."

Merryn could not have anyone hold her or touch her in any way without bringing on more pain. You can read her story here featured in the Mirror:

https://www.mirror.co.uk/news/uk-news/young-woman-bed-bound-three-12559425?utm_source=google_news&utm_medium=referral&utm_campaign=google_news&utm_content=sitemap


Dear Sir/Madam

I am wring with regards to your article http://www.bbc.co.uk/news/newsbeat-44004882 has very serious misleading information about trials into ME, the fact you quote unnamed “Specialists” and unnamed trials is bad practice. How can anyone verify their evidence or their qualifications? You are then misleading the public.

The Workwell Foundation have just issued a letter explaining how dangerous CBT and GET are for those with ME. The science around the world is proving everything that patients have been saying for decades about activity beyond the body of those that suffer ME is correct.

http://www.workwellfoundation.org/wp-content/uploads/2018/05/MECFS-GET-Letter-to-Health-Care-Providers-v4-30-2.pdf

The research from the UK that involves CBT and GET is flawed, on many many levels. Most importantly you cannot enter a trial as suffering from a condition, for the researchers to change the criteria that puts participants of the trial as recovered before they receive treatment and say the treatment cured them. Your journalists stating treatments work should have looked into the claims of those specialists and the trials they have taken their information from.

All through this piece you have shown how harmful activity is to the ME sufferer, so you must start to question the haphazard, flawed and harmful trials and information you receive, you must verify their authenticity and allow others to do the same.

All other studies based on this flawed, non-measurable outcomes and passive aggressive treatment, should be held accountable for their research. You should at least question them to prove their worth. Some of the participants are very young children, at the very least you should ask basic questions.

The biggest trial that was funded by GMC and DWP called PACE, has been found flawed and possibly fraudulent. A debate earlier in the year where Ms Monaghan explained “it will be considered one of the biggest medical scandals of the 21st century.”  https://goo.gl/t6ihTh You did not report this, so therefore you are misleading the public into thinking these trials are honest and safe.

https://hansard.parliament.uk/Commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME

You say the NHS has funded research, which research exactly are they talking about and you quoting?

NICE old guidelines; which are in the process of being changed; stated that heart rate monitors should be worn when attempting any form of exercise. To my knowledge none of the so-called “leaders in this field, in the UK” use them. They research on very young children without explaining the most important difference of ME to other conditions, that of Post Activity Increases Symptoms or Severity (PAINSS) the researchers call this Post Exertional Malaise (PEM). Over the last 20 years it has been known that, Orthostatic Intolerance (OI) or Post Orthostatic Tachycardia Syndrome (POTS) plays a major role in the function of those with ME, yet you never see this in clinics or in trial information that uses CBT and GET. This alone is against the informed consent whereby a clinician must be aware of all the research and possible harms. It is your job and responsibility to ask why this does not happen when someone of the public comes down with ME or is asked to partake in research. Some of these children will have other conditions like Lymes, are you seriously suggesting that Lymes can be cured by exercise.

As a mother I have had to find out most of the basic information of this hidden and discriminated illness myself. I had to watch my son be pushed to the point where his body Just broke. I had no choice, I was misinformed that he would get better after 6 months. Not to mention the science behind the trials is more than a little misleading to me, and the general public. If you were going to quote, you should have given full facts, with named persons, so that verification of facts can be obtained. Not to do this means parents like me are misinformed and like my son at the age of 8 will have their lives ripped away from them. 

Merryn Croft was not able to have a cuddle from those she loved as she lay dying, I have no way of knowing if this is likely to happen to my son because of lack of understanding by professionals and lack of biological research in the UK.

Reading the information about the trials and the research now emerging, I know I am being given false information and that must stop.

Please pass on to me, the information given to your researcher about the trials the Specialists were talking about, and the trials the NHS say they are funding.

Look forward to hearing from in the very near future

Many Thanks

Tina Rodwell

Dear Mrs Rodwell

Reference CAS-4915499-TDRGZP

Thank you for getting in touch with your concerns about the Newsbeat article.
We have forwarded your concerns to the programme team who explained that the statement they used in the article was actually an abbreviated version (please see below for the full statement, and the list of academics that it is attributed to).

"CFS/ME is a serious and disabling illness and the fundamental goal of all researchers and clinicians in the field is to help patients. Everyone wants to see more research, more funding, better diagnostics, and more treatment options to improve the lives of patients suffering from this condition.There are however, some misconceptions about the evidence for cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as treatments for CFS/ME. These therapies help many people with CFS/ME by reducing symptoms, increasing what they can do, and improving their quality of life.
NICE recommends that both CBT and GET are offered to CFS/ME patients, and this advice is based on good evidence from multiple studies and randomised controlled trials (RCTs) showing that these treatments are safe and useful for some patients. These recommendations have been in place for many years, and the evidence-base for these treatments has grown with time. CBT and GET can help patients with conditions such as cancer, chronic pain, and multiple sclerosis, so their use in CFS/ME does not infer that a condition is a mental illness.

Scientists and clinicians are also increasingly frustrated with the distinction made between ‘mental illnesses’ and ‘physical illnesses’ when the latest clinical evidence shows that the two are closely entwined. We all hope for new advances in the understanding and treatment of this condition but right now there are no alternatives for patients, so it is vital that they are not deterred from accessing therapies that can help them. " Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King's College London Prof Esther Crawley, Professor of Child Health, University of Bristol Prof Paul McCrone Professor of Health Economics, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King's College London Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford Prof Sir Simon Wessely, Chair of Psychological Medicine, King’s College London."
We hope this explains our approach.

Thanks, again for taking the time to raise this with us.


Kind regards