NICE Engagement Workshop 2018

NICE Stakeholder Engagement Workshop

16^th January 2018

NICE said that they wanted people to be themselves, I am no professional. I am a mother of a 12-year-old boy, who has been ill from the age of 8, misdiagnosed, given inappropriate Cognitive Behavioural Treatment and Graded Exercise Therapy, as recommended by the NICE guidelines. He was made bedbound. His diagnosis was reported as Post Viral Somatisation Disorder with multiple symptomatology.

The naming of this illness is of uttermost importance and needs careful consideration so that somatisation is never used to mask illnesses.

My son has ME as defined by DR Ramsay 1986. 

I have researched in my own way, and helped to support other mothers who like me have been accused of prolonging their child’s illness. It astounds me after all these decades, few medical professionals or many of the guides into ME/CFS can clearly define Post Exertion Malaise (PEM). My role is to pass on what I know.

My thoughts and musings are in Italics.

I think NICE knew we were coming and did their homework. I walked in and I smiled - ME/CFS was the name they used. Now before you start with the deserved indignation as to why CFS is one of the worst names ever for abusing a group of patients, hear me out, as to why I smiled at the name.

First, it is recognition that ME is the most important part of the name. We have to be mindful of CFS that has been used as the Trogon horse in this illness. If the World Health Organisation classification can be manipulated there is no telling what could happen with a name change?

Second, if we cut off CFS those poor souls who do not meet the full criteria on ME, will languish in the bin of Medically Unexplained Symptoms, on their own for evermore. Who is to say CFS; not treated properly, does not become ME. We don’t know enough, because we have not researched enough, so for me I’m happy with ME/CFS so that no one gets left behind, and until NICE have scoped and sorted the problems and can distinguish between ME and CFS. I am not happy that some medical profession disregard research, put their own take on ME, and does not respect patients. THAT TO ME IS THE ISSUE!

Thirdly they now have to consider how they will tackle the misdiagnosis which is promoted by Kings College London as Unexplained Physical Symptoms/Bodily Dysfunction Disorder or any other name they chose to invent. They have to protect patients from this, imperative for children and their parents. The misuse of Fabricating and Inducing Illness needs to be looked at too, as the previous guidelines have been quoted in many of these cases.

The responsibility of the use of the guidelines is theirs. NICE need also to look closely who they choose to give the facts behind ME and how the naming is going to impact on that misdiagnosis, and therefore the health and wellbeing of all. Be mindful of the children who could lose the rest of their lives to ME.

The decision not to include Thyroid problems and not to look at Vitamin D with the old guidelines was a big mistake as most if not all children with ME have these problems, and doctors reported to GMC if they try to alleviate suffering when using these two deficiencies, again quoting the NICE guidelines. This has to be addressed clearly and succinctly. 

Most parents are forced to find out these facts for themselves, so particular studies need to be found to address the in balance here. As regarding the Thyroid there is a known problem of Iodine deficiency found in the Bristol area, using the same Avon Longitudinal Study of Parents and Children (ALSPAC) that Professor Ester Crawley has used. She has determined from that study it is family adversity giving depression in CFS at 16, but to my knowledge she has never looked at Iodine and their emotions could just in fact be an Iodine deficiency.

 In 2010 NICE promised to look again at Post Orthostatic Tachycardia (POTS), Dr Rowe explained that this has been known about for the past 20 years at the same conference as Professor Crawley in 2017. To my knowledge Professor Crawley never POTS, but she attended a MUPPETS (Medically Unexplained Physical Psychiatric (ET) Symptoms talk in 2017.

My tail feathers were smoothed over a little when I walked into the conference room. I was pleased as the atmosphere was friendly, open, which gives great credit to the ME community. NICE were mindful of the treatment we have suffered over decades, which gives great credit to NICE.

Thank you to all the NICE team that recognition meant a lot, and is a very big deal. Now we need to put the action where those good intentions are.

Then the separation from my partner in crime, as we were given different tables. Barbra is my rock and my security blanket, my knowledge base of how the NHS and NICE work, fluff a duck I thought - now I’m scuppered.

At the opening, they gently took us over how NICE progresses through the guidelines, the order of things, how they would slot together, addressing the name and the past right from the start.

Does this mean they are determined for change, or just giving lip services? Proof will be in their actions after the Engagement?

They were scrapping the guidelines, ripping them up and starting again! NICE were open to a name change, but we must get it right, we all agreed with that. Though a more considered approach was given in a letter to Invest in ME by Dr Baker, and this will cause confusion, especially to those who tended the engagement meeting.

What they wanted from us was to know the reality of the patient’s and carers’ experience, what is important and where the scoping needed to concentrate. A difficult thing to do, given the time frame.

Once scoping was complete they would then make a committee of 13 people (let’s hope it is not unlucky). The chair would be a lay member, would not have been involved in ME/CFS, and be interviewed for the job, with a clear defined role.

Private practice practitioners, would not be involved in the process, but this could be revised if need be.

They normally have 2-4 patients on the committee.

The development Process looks like this

They have added a new process called Engagement (which I think they should keep, and add a few more of these discussions at every step as they go along, to debate progress and give points raised to the committee, > scope > clinical questions > review protocols > evidence report/clinical evidence (this to me is a very big concern as far as I can tell the NHS has lost the skill set to give meaning  to ME or CFS in any reasonable understanding, 101 things to say about this but for brevity I will just say, NICE heard a lot of evidence of harmful treatment, and will leave the rest  for now)/economic evidence >recommendation.

My first thoughts were:

1    Who understood PEM, and its impact through CFS to ME?

2.    CBT and GET is so misused and that misuse so wide spread, it is too late to rectify the problem. There must now be a strong message sent out to the medical profession that this dismissive behaviour must stop, as it is harming patients.

3.  When little research is done on a complex illness, you cannot make good decisions or discussions unless you listen to those that cope, or have lived with the consequences of those treatments that have been implemented.

4.       Who can diagnose the full ME condition?

5.    Who would know which of the guidelines were good and just needed updating, and the ones that need immediate removal, like the harmful treatments that cause a moderate condition to become chronic – CBT and GET?

6.       Know how to treat the condition, and all the coexisting complex illnesses?

On our table we discussed the name for a start. It was mostly decided that it was hard to find a name for a disease that was so mixed, misunderstood, and misdiagnosed without further research. The research fraternity would rather use ME/CFS as it has in the past.

If we changed the name now, how would that effect the new biomedical research coming out?

As for the views of patients around the table it is the attitude attached to the name by the professionals that needs to be addressed. It was also felt if we left CFS out, those that start with less symptoms than on the harsher criteria, would be missed. If they then developed the main PEM symptom in ME, this would be very harmful to them. When does CFS become ME.

Addressing the attitudes and understanding of doctor’s; they; by and large have been misinformation and have not been kept up to date with biomedical ME or CFS research, is the biggest problem. This not only affects ME patients but everyone who shows the signs of tiredness or fatigue; which many chronic conditions do. Not having the right tests at the right time, or dismissing the patient out of hand due to the stigma, is causing many lives; including children with many conditions like ulcerated colitis and peritonitis for example, to have been left untreated, near death and with lifelong avoidable disabilities, as it is with ME.

This attitude/misunderstanding leaves many like me; as I explained, not able to take my child to the  GP for any medical problems, for fear of the consequences of this lack of understanding, misdiagnosis. For instance, my son has dry skin forming in his ears when in a PEM state. It is uncomfortable and at a time when his whole body is shutting down. I am unable to get him to a doctor’s surgery due to this impacting deeper on his PEM. But more importantly, what will be said to him and how he will be treated. In the past all sorts of awful things have been said to him, and open threats made to me. This leaves me isolated from all medical care for my son, and coping on my own. This must change.

I explained in New York state 85,000 physicians were emailed a letter regarding Myalgic Encephalomyelitis (ME). This was by the Health Commissioner Dr. Howard Zucher. This needs to be done to put right what has gone wrong in the UK. There needs to be clear consequences if patients are treated this way. Without this, patient safety, and their right to have appropriate diagnosis and treatment will not take place. Due candour needs to given to ME and CFS patients like any other illnesses.

I had four Drs/researchers sitting on my table, and I was very impressed by their understanding of how important an issue this is for all patients, not just for those with ME. Balanced intelligent views of the hardship of doctors and patients was both refreshing and heart-warming, including our scribe who I would like to personally thank for the sensitive way she handled my experiences.

It was felt if you went to your GP and they looked first at you with respect and emergency, at the inability to get better with any infection within 6 weeks, as a potential health threat. They then kept reassessing for the core symptom of PEM; then this would be a better pathway and save a lot of harm, time, and stress. This single act could safeguard children from the lack of understanding. This recognition would save lives or a life of disability.

My main point was that only one Dr I have talked to; up to that point, understood or accepted Post Exertion Malaise/cognitive exhaustion. It is no good putting these in the guidelines and not being able to explain what this means to the patient or to their health, and how important this is as a diagnostic tool.

We discussed things like Post Orthostatic Tachycardia Syndrome (POTS), hypermobile joints, Orthostatic Intolerance (OI) and how this meant many consultants that did not, or were incapable of communicating with one another, on what specific symptoms and difficulties may be impacting on the patient. Inevitably this means exhausting the patients with endless meetings, going over the same ground, with little to no real constructive outcome. Patients need to be seen not just a series of “specialist’s parts”, but need to know the sum outcomes of those parts and about the interaction between the whole body when you have ME.

Many health professionals do not/will not test for any other condition, believing that ME/CFS would bring just negative results. Therefore, so many coexisting conditions get missed. That accepting these other conditions were all part of the ME, is a trial in its self. Many die from cancers because they as a patient are dismissed, that fact alone is horrific and telling.

The other problem is that most clinicians within the ME field; do not understand the importance of Heart Rate monitoring. Over 1,000 patients are doing this for themselves, and finding that their lives can be improved. Once again; a case of not listening to the patient and dismissing them.

The scribe on our table worked as a part time GP, so understood the constraints on both doctor and patients. The discredited Oxford criteria is now out, and the Canadian Guidelines are too strict in the first instance, but a good solid tick box that can be used to track progress from CFS to ME would seem wholly appropriate with both the patients, carers and doctors on our table. Yearly consultations, as standard practice for all, including severe patients, so home visits needed.

The father of 18-year-old girl who has been sick since 2010, bedridden was concerned over the harms done by CBT and GET. We all agreed that the way CBT and GET approach by most NHS staff was totally unacceptable due to the way it was conducted. There are problems with repeat infections, never looked at. This needs to be addressed at as a matter of urgency.

The misdiagnosis of Lymes and the inadequate tests was also discussed. A better test needs to be looked at. The amount of life wasted through this being misdiagnosed is astounding, and as with ME due to poor diagnosis and inadequate tests, it is labelled as Unexplained Medical Symptoms.

This goes to show how misinformed the biosocial take on illness is. I don’t think anyone would argue that the great plague could be contained by changing your bodies systems through determined thoughts and activity? … Although they may try.

It is also worthy to note Upper Respiratory Infection illness, is altered by prolonged exercise. In ME this means prolonged activity of any kind. The advice to endurance athletes is to rest! That these infections are increased in the days following prolonged strenuous endurance events, and it has been generally assumed that this is due to the temporary exercise-induced depression of immune function. So, should we look at ME patients as endurance athletes in a perpetual state of exercise-induced depression of immune function? If we don’t, we are causing known harm! The research into TFG-a and TFG-b after exercise in the ME field and sports research, should be followed closely. The fluctuations in many tests and research are possibly due to the circle of PEM, the individuals on the trial are going through. Once again PEM needs to be fully understood.

It was also discussed that there had been 3 patients on the last guidelines, and that this was problematic for many reasons. The diversity of severity cannot be conveyed with just three patients. We were told that it will be made clear that the patients on the committee will be representing not just themselves, but also all patient groups, and it will be their responsibility to find the facts.

The problem with this is, if they are ill or are time short this will be problematic. You give 10 people the same facts they will interpret with their own bias, and we must be mindful of that. Perhaps the Engagement process should follow all the steps in the NICE guidelines, using the same group of people for continuity, as a discussion and feedback process to give balance to the committee (since writing this I have become aware of a tweet that has been liked by professor Sharp who attended the engagement, 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, I do think NICE need to consider his actions, and understanding of ME and research in general. 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.

It was also discussed that the most severe patients get little to no clinical help, contact with doctors and are unlikely to get involved, so this must be considered. None of the severely affected are ever acknowledged, so no real understanding is there.

This is also a worry as most that say they are experts in the ME/CFS field, do not handle severe patients ­- as home visits are rarely heard of.

Clear defined severity scale needs to be made and understood.

We discussed how the skill set of observing and ability to diagnose is being eroded by the psychological and now the biosocial model.

For me this meeting was a good first step, but I have grave concerns over the history and the abuse.

1.       We now have no understanding of ME and lost the ability to diagnose and treat appropriately. Any advice NICE or Patients gain from clinicians are going to be tainted with the biosocial model that IMPARTS are teaching the GPs, that has failed the patients. Who are NICE going to turn to?

2.       Very little biomedical research has taken place in UK, so who are they going to ask? The research must be acceptable to the ME community, who for decades have been telling everyone the truth about this illness and have been stigmatised for doing so.

3.       Define evidence or supporting evidence needs to be made clear, so that this can be agreed. If patients and carers are not included in this, those that have said they have treated ME and have yet to understand PEM, will be the ones that make the guidelines. This must not happen again, as it is a waste of lives and funds.

4.       No or little understanding what PEM is to the individual, or the continual cycle it perpetuates, this needs addressing. All NHS staff and other services should have been able to diagnose/understand PEM, and the consequences to health. This is not the case. We need a clear statement on the guidelines that exist now, to inform all that PEM is a recognised part of ME and part of the  diagnosis

5.  We need to address the importance of infection, In 2016 Explorer Henry Worsley died after developing a serious infection. He said "Well, today I have to inform you with some sadness that I too have shot my bolt." Henry said his journey had ended because he did not have the ability to "slide one ski in front of the other". Does this not sound like ME? "I will lick my wounds, they will heal over time and I will come to terms with the disappointment," he added. Many ME patients will say this every time they do small and insignificant tasks, and get dismissed at every turn. He died of complete organ failure due to a stomach infection that they could not treat. Does this not sound familiar? How many die from complications such as these? In the month prior to his death Maureen Hansen found stomach infections in ME patients that could diagnose ME in all cases. Autopsies in 2005 found all sorts of problems including organ failure that would have caused great suffering.

6.       No one goes out or deals with severe ME, follow their journey, or collate figures. As with my son I never take him to the doctors due to the harm they unknowingly cause, and the scrutiny they place me under. Yet I am the one that has supported my son and his body from being bedbound from CBT and GET treatment, to housebound getting stronger. 

There are three considerations that must be measured when forming the new guidelines.

1.       Shipman report that states Patients and carers should be listened to. The Government agreed that complaints from patients or their representatives and fellow professionals can provide vital information in identifying potential risks to patients’ safety and that work with stakeholders on a set common standard.

2.       Due Candour, no more harm, apologies and guidelines put right. Doctors informed immediately that GBT and GET are potential harms and are taken off as treatments.

3.       Most importantly, informed consent. We must be given full facts. Most of the reliable facts are from patients. Due to lack of research over decades in the UK, research from around the world should be included, with a provision for the new biomedical work coming out.

Dr Ramsay and his understanding have stood the test of time and research. I would strongly advise this is the place to start.

These three patient safety steps should have safeguarded my son and my family, but they have been dismissed. The misuse of Fabricating and Inducing Illness beliefs has been allowed to continue unchallenged. 

We have forgotten the doctor’s role should be to ‘heal sometimes, relieve often, comfort always!

Yes, I am hopeful, the day was a good solid start to what needs to be done to protect patients, and enable good doctors to do best practice, safely within our healthcare.

We all need to support NICE to make the guidelines. However NICE needs to support the ME community, and stand up for the patients that have been abused over decades. Are we being listened to?

Time will tell, and actions speak louder than words.

To get involved and on the NICE Committee, go to www.nice.org.ukGet-Involved/join-a-committee 21st June 2018.

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

Intelligence is in the Eye of the Beholder

Intelligence is in the Eye of the Beholder

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

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

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

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

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

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

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

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

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

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

Who stole my hero?

Who silenced him

To hide the truth?

Who is going to help my boy now?

He's only got me,  

his mother

And trust me she’s of no use

I've asked a few questions

But the answers made no sense.

Ya see I'm a woman

And apparently that makes me

Hysterical

 with no common sense.

I try to be brave 

A tough cookie

But who is going 

To listen to

A woman 

A mother

Would you?

Over 200 families have been ridiculed for believing their children suffer from ME. Over 25,000 children put at risk from professionals, who should know better. All because one group of psychiatrists fiddle the numbers on a trial and decided doctors should do not test to look for physical signs. This they say is in the patients own interests?

Children who later, it has been found to have profound problems with how their body distributes their blood, and therefore their oxygen levels when they stand up.

ME and PoTS go hand in hand.

One of the only Dr's who truly understands Myalgic Encephalitis, has been silenced by those that feel mind over body is the way forward for a problem like ME with PoTS? They do not recognise that when most, if not all ME patients stand up their heart races, starving bodies of oxygen doing untold damage! 

In general GP's don't look for physical signs when a diagnosis of CFS/ME is made, because they have been taught not to. We, you and me, let this happen because we choose to stay in the wilderness. That one Dr; world renowned for helping families like mine and my friends, has been told he cannot speak about ME or to help those suffering untold damage. How many more children will suffer now?? 

Forget us not, those of us in the wilderness, covered by the thorns of misunderstanding 

Of All The Silly Things

Of All The Silly Things

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The End

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

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

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

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

This was taken from the EDHS website:

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

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

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

Taken from the Voices from the shadows:

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

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

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

Lactic Acid and the brain

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

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

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

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

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

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

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