BBC Complaints Told Me I Was Toxic?
Well That Fluffed Up My Tail-Feathers!!!
I got the same responce as Countess Mar; more or less the same word for word response. So I wrote a reply
I
don’t believe I will get a level or concise response, and will think about
making a complaint to Ofcom. Again I do not envisage getting much of a reply
there either but feel you have to start somewhere.
http://www.meassociation.org.uk/2016/11/bbc-director-general-replies-to-countess-of-mar-about-coverage-of-the-fitnet-nhs-trial-24-november-2016/
Here is my reply and what do you think I should do next? Any point to it?
Ref: Cas-4074869-G7PJ8J
21st November 2016
Dear Brian Irvine,
I was deeply unhappy and saddened by your
response to my complaint about the mis-information
1st November 2016 on the Joanna Gosling Show. The BBC is required to
be accurate in reporting facts, impartial, and I would say,
needs to be respectful to all.
To use the word Toxic in a letter about a
medical condition in my view is unprofessional, and undeserving against a
medical condition which is so devastating to so many, including very young
children, I did take it personally.
Unfortunately
I found no response to any of my questions raised, even though it stated that
you had “reviewed the programme in light of your concern.” I raised many
concerns!
You go
on to say the discussion “was on the back of news that a therapy which successfully treats two thirds of
children.” My complaint pointed out this was very misleading, not least because
the trial had not even started. Furthermore the Dutch trial it is based upon,
proved no long term benefit, and had no realistic harm definition, due to the
known consequences of over activity in ME sufferers.
My
further point is that you have not included up-to-date research which would
have made a big difference to the understanding of this disease and would allow
the viewer a more balanced and unbiased view. You should have kept your selves
informed and up to date with this illness.
You rely
heavily on one particular group of people that the Science Media Centre (SMC)
protects, and that have been discredited in their research and claims against
other researchers, charities and suffers, the latter never getting an
independent voice on national BBC Radio or News, only on some local BBC radio
stations.
Listening
to Steve Helwetts Media show’s interview with Fran Unsworth Deputy Head of the
BBC News and on the board of the SMC, giving
assurances the emerging government funding may cloud the transparency and
threatens unbiased reporting, I am concerned in this case those blurrings of
reporting; “knowing the government is
listening”, is not as transparent at she would like?
My
understanding of ME is a neurological, musculoskeletal condition with autonomic
dysfunction, which causes abnormalities in the
nervous system, autoimmune, cardiac, immunological and metabolomics systems
putting the body in a dauer (meaning “endurance” “duration” “permanent” type of
stasis (a period of state of inactivity) to survive) state. Causing
problems: of a continual infections state, general inflammation, inflammatory
of gut with connective tissue damage. If undiagnosed or treated in the wrong
way for the individual, this can and does have life threatening consequences.
ME/CFS
is now under review with NICE, taking into account the new and fast changing
understanding of this multisystem chronic condition.
Points Raised from your reply to my concerns:
1.
The
program never mentioned the discredited PACE trial of this type of treatment
and should have been used pivotal in the debate. It was published in 2011 and
was hailed by the SMC and the UK media in general as successful, also funded by
the National Institute for Health and Research and Department of Work and
Pensions. It was discredited and could have shown the viewers more balance.
None of the patient’s views or experiences of this trial; to my knowledge have
been actively sought. Unfounded and exaggerated accusations towards severely
ill patients have been made by those involved directly or indirectly with the
trial, and most if not all have been unfounded. One such patient at great
personal health and cost obtained the raw data from the PACE trial through a
reviling court case, where the judge dismissed the many dispersion's by the two
standing against the data release. The re-analysis by independent statisticians
found the data to be fraudulent and that instead of the claimed recovery figure
of 22% after CBT and GET, the actual figures were only 7% for CBT and 4% for
GET. So therefore the PACE trial was null. This bears direct evidence for
parents to base their informed opinion on, for the FitnetNHS trial, which seems
to be more or less the same treatment.
2.
The
findings of the Dutch study itself, which was quoted by Professor Crawley was
inaccurate (66% of participants were said to be “cured”) because it grossly
exaggerated and mis-represented the findings of its small trial (Professor Crawley
dismisses other scientific provable studies, as irrelevant due to their size).
This study forms the basis of evidence of efficacy, so should have been
questioned. They purported there was a significant difference in school
attendance at six months between CBT and usual care (75% vs 16%). They did not
make it clear that children who stay at home to receive treatment are at a big
advantage, as travelling and going to hospital
can make ME sufferers relapse. The ultimate findings showed no difference at 2
year follow-up. The presenter did not question this and failed in her duty to
mention the “recovery” were virtually the same as for the entry criteria into
the trial. The two principal investigators of the PACE trial professors White
and Chalder commented on that fact “recovery” criteria was liberal and “not
stringent”, a point that patients pointed out on the PACE trial and were called
vexatious.
3.
Behavioural
theories play a heavy part in Professors Crawley’s Protocol. This theory has
been discredited and deflated to the point of not applicable by most in the
medical community. This theory was also applied to the Gulf War veterans, who largely suffer the same symptoms, and in
the beginning were treated the same way. The implications of the protocol weigh
heavily on the mothers parenting style. In this regard the Dutch protocol calls
into question “The fact that long term recovery was negatively associated with
maternal focus on bodily symptoms could be seen as an indication that during
treatment the influence of this specific predictor had not been adequately
addressed. And goes on to say a “separate programme for the mother is needed”.
This I find rather strange as the trial is child led, by them being involved
and reporting on their symptoms? Would this emphasis be acceptable for other
neurological conditions or other autoimmune illnesses?
4.
SMILE
Trial was never brought up in the conversations, though this is based on the
same principles of the FitNetNHS trial. Yet again Crawley weighed heavily on
the intervention of mothers and never released the data to show evidence, just alluded
to its outcome, that mothers were responsible for noncompliance. What is more
probable is that the children were no longer able to
take part. The harms, just a small mention of one child and one mother going to
hospital, the information however ebbs and flows or gets taken down from the
internet. This trial was based on the controversial Lightning Process. This
withheld information could have helped mothers like me, to make a more informed
choice.
5.
The
protocol leaves the option open to question the mother's
nurturing style. This should have been robustly questioned in the
interview. Why is the necessity of this
over bearing importance on the mother in a curative treatment throughout her
trials, when the child has a physiological illness and is why I mentioned
Karina Hansen. As Mary Jane Willows (AYME) works closely with Professor Crawley
and for Children and their families who have been persecuted in this way, I am
very surprised this approach has been acceptable to both of them.
6.
You
mention Lizzie Horgan; who I believe was on the Woman’s Hour program some time
back, again with Professor Crawley, and brings into focus my main point. Lizzie
is learning to live with a debilitating illness, she is not recovered. I would say Lizzie is a level headed individual who
is resilient and a great advocate for the ME community.
7.
Diagnosis
for this trial: Professor Crawley says is based on the NICE guidelines, but she
omits the cardinal characteristic of Post-Exertional Malaise (PEM). This error
by stealth has now transformed their prospective cohort into fatigue only. This
will lead to confusion and make the findings null and void to ME sufferers.
This does not give clarity to doctors, social workers, educators, or
parent/carers and can lead to great harm.
8.
You
mention Jane Colby; she was given a room with others talking and laughing in
the background, which must have been very distracting to talk over as it was to
listen to. I found that very disrespectful to a lady who tirelessly works to
impart the truth to schools about this complex illness and gain some proper
treatment for children with ME.
9.
There
should have been another researcher or medical expert that could have given a
balance to the debate. Dr Speight unlike Professor Crawley has helped many
severely ill children with ME and it would have been most helpful to hear his
views on this matter. Doctor Speight has given many talks on the subject of
children with ME and was part of the group for the
International Consensus Criteria, which is
highly regarded by researchers in the ME
field. He also understands the importance of PEM.
There are many more researchers in the UK such
as Professor Newton, Professor Malcolm Hooper, Professor J Edwards (his open
letter about the email sent by Professor Holgate shows how the disregard to ME
patients, other charities and researchers, perpetrates through some medical
circles, not however protected by SMC), Professor J English, to name a few.
Unfortunately they have been hampered by many in the SMC, who have chosen not
to report on their findings and on the biomedical pathology presented at the
International Association at Fort Lauderdale October 2016
It would seem Professor Holgate's interventions through,
amongst other measures, email against young
researchers such as Keith Geraghty goes
unnoticed. His treatment by some of those
involved in the MEGA study has been disparaging over the last few years and you
would have assumed a young researcher would have been actively sought and
supported by those in the ME field. His efforts have been welcomed by the
ME/CFS community and most charities.
10. You say that the BBC cannot ignore stories like
this, however you did ignore the bigger story of the PACE trial going to court
and that outcome, and this shows a great deal of bias in your reporting. You
also have neglected to report on the British Government becoming the first ever
to be investigated by the United Nations for disabled human rights abuses. That
it has condemned the “functional” assessments used by the DWP that were
developed by the Wessley School using ME sufferers on the PACE trial
biopsychosocial model.
11. You never covered the question of not including
the Karina Hansen story that broke at the same time as Professor Crawley came
on the show? Neither did you address Sophia Mirza (whose autopsy showed
physical problems), Emily Collingridge or
Naomi Whittington and it has been brought to my attention of the court case of
Ean Proctor. These four young women and young man, are worthy of a mention and
to question treatment to illustrate the problems of over emphasising on the
mothers input, and the problems that Tymes Trust deal with. They also prove
what can happen if you push your body too hard.
12. However it was the website references that you
gave as evidence of a broad range of CFS/ME research that had me the most
perplexed. It had just one biomedical study of old, one that show the
difficulties that all research faces when trials go wrong, and two that show,
the now discredited information about the difficulties the ME community possess towards researchers, which should be amended with
some urgency. This I do not consider a balanced or unbiased view:
http://www.bbc.co.uk/news/health-31644618 One story to show biomedical research from
2015 which has moved on considerably and had very little relevance to Dr
Crawley’s study. Furthermore, it was not an interview with the researcher
herself and was given very little space, though I note you have a remark by
Professor White who failed to mention his own study which pointed to the
trouble sufferers have when traveling with increase of inflammation? Though I
am no expert, I do feel this was relevant to Dr Crawley trial as I mentioned
earlier about the travel:
Journal of Chronic Fatigue Syndrome, Vol. 12(2) 2004
http://www.haworthpress.com/web/JCFS 2004 by The Haworth Press, Inc. All
rights reserved. Digital Object Identifier: 10.1300/J092v12n02_06
we found elevated concentrations
of plasma transforming growth factor beta (TGF-ß), even before exercise, in
subjects with CFS (median (IQR) of 904 (182-1072) pg/ml) versus controls
(median (IQR) of 50 (45-68) pg/ml) (P < .001). Traveling from home to the
hospital significantly elevated TGF-ß concentrations from a resting median
(IQR) concentration of 1161 (130-1246) pg/ml to a median (IQR) concentration of
1364 (1155-1768) pg/ml (P < .02). There was also a sustained increase in
plasma tumor necrosis factor alpha (TNF-cc) after exercise in CFS patients, but
not in controls (P = .004 for the area under the curve), although traveling had
no such effect. CD3, CD4 and HLA DR-expressing lymphocyte counts were lower in
CFS patientshttp://www.tandfonline.com/doi/abs/10.1300/J092v12n02_06
One about contamination and a retraction of the
paper in 2011. I have no idea why you have given this as evidence of unbiased
reporting, as again it was not an
interview and this debate again has moved on. Though if you had debated the PACE
trial, which had similar problems I could have understood its inclusion. http://www.bbc.co.uk/news/health-15017660
You have never mentioned one of
the many important papers and would suggest how wrong it would be to do any
form of extended or keep going life style. http://www.openmedicinefoundation.org/wp-content/uploads/2016/08/Naviaux-PNAS-CFS-Metabolomics-2016.pdf
Maureen Hanson:
Then there is all the work Fluge
and Mella have been doing since 2011
The one about Tom Fieldings story
that was given to him from the Science Media Centre, should have never been
included. Dr Crawley admitted in a radio broadcast in
July 2011 that she had not received explicit death threats but had misinterpreted
one email to constitute a death threat and that her local police force had
taken no action. Including this
I find insulting to me personally, and to the ME community in general. http://www.bbc.co.uk/news/science-environment-14326514
These allegations were unfounded and should
never be used against people trying to get to the hidden truth as regards to
their very debilitating illness. In October 2016 they were dismissed by the
judge at the First tier tribunal as “Without foundation” and “wild
speculation”. These were the same people
that have continually been part of your news with regards to ME/CFS. This type of tactic is used time and time
again against all but a few that are protected by the SMC . I fail to see the
relevance of the evidence you gave me of your unbiased interviews. To use the
word Toxic in relation to any person, researcher or association is
unprofessional and a strange term to use. It is unforgivable to use it when you
know it to be untrue!
The last one was of the group of
people you have reported on throughout your listings given and is very
confusing. No coverage was given to any other professional with just a link to Prof Sir Liam Donaldson who
states it is a “biomedical condition” but you have to press on
the link which rather proves my point about your biased reporting? None of
these are interviews or proper debates.
This was again an article by “By
James Gallagher” and I think it would have been more appropriate if you had put
in his: “The Inflamed Mind” BBC radio 4 program, can your immune system make
you psychotic, as it seems to me this has more relevance to ME/CFS - as it
would seem research is gaining more information and understanding on ME, it is
looking more likely to be an inflammatory, autoimmune, and metabolic,
dysregulation affecting the heart, putting the body in a dauer state. It
saddens me our researchers have been held back by funding and more importantly
support and less ridicule from the SMC is needed to carry these research
forward in this country.
13. To openly say that the FitNetNHS trial promise
recovery is in breach of many medical codes of conduct and to mislead patients
by promising a cure when there is no such certainty, is in breach of the
General Medical Council Regulations as set out in “Good Medical Practice”
(2006) which was brought to my attention by the Countess of Mar.
“Providing and publishing information about
your services-paragraphs 60-62
60. If you publish information about your
medical services, you must make sure the information is: factual and verifiable
61. You must not make unjustifiable claims
about the quality or outcomes of your services in any
information you provide to patients. It must not offer guarantees of cures”
This
concludes my response to your points over my concerns
I would
like to say why this matter is of the deepest concern to me. I am a mother of a
11 Year old boy who wakes up every morning as though lead fills his veins, the
headaches are intense, nose bleeds, high and low blood pressure and heart rate,
can black out when he sits up or standing still too long, unable to see,
cognitive dysfunction so bad that he forgets his name or where he is. In short he is in so much pain and lack of cognition he
has no life to speak of. He was 8 when he was rushed to hospital; no scans were
performed and not many investigations. They ran through his history and when it
became apparent that he had a virus of some sort, they just gave a diagnosis of
somatisation/CFS.
After
two years of Cognitive Behaviour Therapy,
where I was put under immense scrutiny and pressure for my son to recover and
my son was told no one will take any notice of his symptoms, my son became
withdrawn. I would say after his treatment by ill-informed medical
professionals, his strength of character is immense, because he took his
treatment on the chin. He never spoke of his increasing pain; he learnt to cope
with it. This we found out later should have been taken seriously, and will
possibly have lifelong consequences as it was a warning of things going wrong.
ME, by the World Health
Organisation is recognised as neurological
disorder. Step back and think how this must feel for both him and me.
Our
restraint and dignity I would suggest, far outweighs the behaviour of the
doctors and researchers, SMC, government, MRC
and the BBC that insist this is more a matter of mind over body.
He also
had Graded Exercise Therapy, which to me in the beginning made perfect sense;
you just have to gently get your body back into the swing of life, like any
other illness. But if you read up on
sepsis, meningitis, diabetes, the symptoms and the way the heart is involved
are connected. Not all illness give way to recovery. Your information does form doctors',
educators', social workers' and people in general's
understanding and directly influences people’s perceptions, as shown in the links
you gave me.
We later
found out that he had post orthostatic tachycardia syndrome (PoTS), undiagnosed
from the very start and one of the 1986 ME diagnosis criteria by Dr Ramsey? Yet
many doctors do not look out for or understand this when suspecting ME/CFS.
However, this is not on the Oxford Criteria. If you look up PoTS on the NHS web site choices, you will find a connection
to CFS. This is never mentioned by Professor Crawley? NICE guidelines also
stipulate a heart monitor should be worn when exercising, I do not think
Professor Crawley does this either and I would say this is a worry.
We also
found my son was a Coeliac suffer, his reading for the protein was very high
and as yet is not coming down enough to be measured on his blood tests. This
would have done great harm to my son’s body and he has now grown 6cm in the
last couple of months, showing his body was effectively being starved of
nutrients.
To
complain about these misdiagnoses and our treatment; I have been informed would
put me under threat, mothers are accused of Munchausen by proxy. We cannot
learn from these types of errors if we do not take account of mistakes. Reading
the protocol of the FitnetNHS trial, and listening to Professor Crawley, it is
hardly surprising mothers get blamed for their children not recovering. I would
say that people misunderstand the seriousness and disability of ME. Over 200
families have gone through this with very sick children, who have been accused,
and none have been found guilty. Yet no one
ever looks into the behaviour of professionals as to why this happens to
innocent families fighting against a chronic illness. Social services or
education authorities are left making decisions with not all facts being put
forward on the media of the medical understanding, and this why I mentioned
Karina Hansen and Sophia. The public should be made aware of this.
Since
Professor Crawley made her rounds on the BBC media circuit, many mothers have
been harassed to send their children to school and several have been reported to the social services, this I feel is a
direct response to your biased media coverage. If you look on the internet for
information from the BBC it is clear what message you send out. The reporting
is one sided and the truth scilenced.
As a
mother you are not safeguarded and it would seem have no rights above the
Doctors, educators, social services concerns over safeguarding your child,
therefore no balance of facts. If the Doctor you are under does not fully
understand your child with ME, and they write to the school stating your child
can attend school for 5 hours a week, you as a parent have to comply. If you do not send your child to school for those
five hours a week on a regular basis; as happens with children that are
fighting this illness, then the school have a duty of care to inform the
attendance officer no matter how they may feel about that child’s health or
wellbeing. The attendance officer then brings in the school nurse and the
social services and because of the misinformation and wrong impression of ME,
they then put the child on a protection order. This whole process can take as
little as 30 days. The police can break your door down and forcefully take your
child away, without you being aware of any safeguarding issue.
Even if
the mother has been proven not guilty by a court of law, most of the time the
child is harmed by the process and foster careers not understanding this
chronic illness, and in some cases they never recover. No one, it would seem, cares to look through the cases to find
if the same doctors are making these mistakes many times with one particular
illness. Neither do they review cases and make sure the child recovers, with
some children getting lost in the
system forever.
I hope
the above information makes it clear why you should take the time to fully
investigate, and that you have the facts, and I would respectfully ask you to
make amends. To give unbiased and a balance to the behavioural interventions
that you have promoted, and provide the same platform you offered Professor
Crawley to those that have worked hard, and tirelessly to provide grounded and
provable evidence of the biomedical problems and aetiology that is now
emerging.
More
importantly allow people who suffer a voice and not ridicule.
Kind
Regards
Tina
Rodwell
