NICE Stakeholder
Engagement Workshop
16th
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.
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.
