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.