BBC Should Check Their Information

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

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

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

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

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

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

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

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


Dear Sir/Madam

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Look forward to hearing from in the very near future

Many Thanks

Tina Rodwell

Dear Mrs Rodwell

Reference CAS-4915499-TDRGZP

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

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

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

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


Kind regards