Dear Laurie Taylor and the BBC

 

Dear Laurie Taylor,

I have listened to your show for many years. Working at home enables me to prepare a meal for the family at the time your show comes on. It is thought provoking and on the whole balanced on the side of the professional that should know better than the - put down and silenced public.

After listening to your weekly show on Wednesday 4^th January 2023, I thought the time has come to write in and explain the reality of social conditioning; with its foundation in the belief that the patient is to blame, the marketing and gatekeeping of wellness-based healthcare by a few that have the ear of the Government and the DWP. The connection here between psychiatry, the pace trial and health is discussed by Brian Hughes (hughes, 2021), the damage of the Mental Health practitioners who are taught Medically Unexplained Symptoms (MUS) but don’t understand the autoimmune response after viral infections. Jackson and Kroenke discuss the issue of not looking further than MUS  (Jackson & Kroenke, 2006) after reading this look at the list of autoimmune diseases and the complications of not addressing or understanding post viral diseases, which needs to be discussed on your program in Covid times.

The impact on mental health and autoimmune is well known the inflamed brain is also well known but ignored Edward Bullmore discusses this in his book (Bullmore, 2018). Edward Bullmore MB PHD FRCP FMedSci trained in medicine at the university of Oxford and St Bartholomew’s Hospital, London; then in psychiatry at the Bethlem Royal and Maudsley Hospital who has just published a new paper (lynall , et al., 2022) on the Genetic variants associated with psychiatric disorders are enriched at epigenetically active sites in lymphoid cells.

To understanding complexities of post viral conditions such as Long Covid and ME and the work to dismiss the long-term impacts on health and mental wellbeing, you need to understand the ever-changing names such as Functional Neurological Disorders; once called conversion disorder or Medically Unexplained Syndrome which again was once called somatization disorder, and how these impacts on the NHS and care. We should know enough about infections by now to understand the damage done. What has AIDS, Celiac, Migraines, rheumatoid Arthritis, Stomach Ulcers, and diabetes taught us?

You once had a program on the placebo effect, where you called people like me activists, you also used the term cfs another way of hiding the disease that Myalgic Encephalomyelitis (ME) is known to be.  You used this terminology again as some sort of derogatory label on Wednesday’s program, a put down, which I find offensive.

I wanted to explain why a difference of opinion in science, does not mean the patient/advocate or as you put it activists are wrong. The harm of demanding mental health over physical disease, has been written down over hundreds of years. Science should be based on “prove you are wrong and if you can’t then you must be right”. To use this in its proper context, first you must explore all the facts and possibilities and not rely on the foundation of opinion without the lived experience, which mental health has done with ME.

First and foremost, the derogatory term of “activist” was used on women suffragettes. Since this time women have been fighting against mental health disorders to get the right information and the right healthcare - just look at heart attacks and endometriosis with long history of social conditioning that women have “mental liabilities”.

The word activist has been used on advocates like me, who have made changes for those with autism that were put and still are in asylums or as we now know them as homes, and those who suffered from many; now known conditions that are still medical unexplained but accepted like diabetes and celiac disease.  On Wednesday’s program it was pointed out how women are targeted and held to account by society with the mind, body, wellness beliefs that have infiltrated our healthcare.  This impacts women like me, who become mothers that have children who dramatically decline into disability, with no real testing, empathy or understanding - just judgment and opinion that goes against all the science. A nurse who looked back on the Royal Free outbreak takes us through the transference of medically accepted understanding to mental health opinion used for political purposes (Ovenden, 2004) what we saw back then is being repeated again with ME and Covid.

My son was 8 when he had an obvious post viral condition, his blood showed signs that were ignored of celiac disease, which was two years later picked up. However, there were other signs of his body under stress. Instead of testing and looking for physical disease, they gave me their opinion and him CBT and dismissed his physical symptoms as somatic disorder. The harm inflicted on him is there for all to see in his lived experience, the history of medicine, and by thousands of others over decades that have been treated just like my son, starting most notably from the time of the Royal Free outbreak.

This has led to a difficult situation and long-term physical and mental care problems, not only for my son but also to me. Being accused of Fabricating or Inducing Illness (FII) is hard to fight when family courts only have to think you may cause emotional harm in order to take your child away, backed by opinion with no evidence. If a mother restricts a diet for instance, she is automatically assumed guilty even with Drs notes giving clear evidence of autoimmune diseases. Unbelievable you would think but the evidence is all around us. It is written in case studies, in the voices of the young people able to speak out on social media. How many are hidden that are frightened and fighting for the truth.

Please stop using inflammatory words such as activist, when you have not fully understood the problems by alluding to those who are on the internet or on social media. We have seen the damage when a general opinion about misinformation is put out by journalists, professionals, and medical professionals the PACE trial shows this. You did touch on professional misinformation but I feel you need a program to look further into this. We need robust understating of what wellness and mental health is going forward especially when evidence points to the reality spoken by activists like me.

You also stated about abuse on the medical professionals from advocates in the ME community on the program about the placebo program. However, this has been disproven and the last time this accusation was used on the ME community it was by Professor Crawley who held up a poster done by an artist who asked Professor Crawley not to use his work in her TED talk. Fabrication in the medical world it would seem is allowed, but those using science and facts are called FII supporters or activists, so please put the record straight, the facts are here (Lowe, 2017)

Remember science, healthcare providers the government get it wrong and do politicly chose to misinform the public and there is a balance that needs to be met here by respected people like yourself, it is your duty, especially as we go through this difficult pandemic time. Patients can be more informed about their condition than those who say they treat the condition.

As a balance and redress of the issues I have raised around activism, wellness, and healthcare in this letter it would be good to have Brian Hughes who is an academic psychologist and university professor in Galway Ireland. He specialises in stress, health, and the application of psychology to social issues. He has written widely on the psychology of empiricism and of empirically disputable claims especially as they pertain to science, health , medicine and politics. Along with Edward Bullmore MB PHD FRCP FMedSci the balance of our understanding, thinking and wellbeing would be balanced with what we know.

If you could let me know in good time, when this much need balanced program is to be aired, I would be grateful. We all have to take responsibility for the facts of science to protect the population and patients in particular – Health is a balance of diet, social standing, environment, physical and mental impacting on genetics stressors and should be seen as a whole, not in part or bias opinion.

 

Yours Sincerely

 

Tina Rodwell

 

Is The BBC Under Government Controll?

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

21^st November 2016

Dear Brian Irvine,

I was deeply unhappy and saddened by your response to my complaint about the mis-information 1^st 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:

https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-016-0171-4

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.

http://www.bbc.co.uk/news/health-14883651

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

A Normal Converstion

A Normal Conversation Between Heroes.

We take a normal conversation as such an everyday occurrence a minute to minute nothingness that happens all day every day and sometime we wished it would stop. This insignificant part of life we take for granted. If we feel down and despondent we talk to a friend, even a stranger can uplift our spirits with a single word or two of acknowledgment.

Imagine if this gift was taken away and you could only use it once in a month. What if listening to the TV is just too much? Cocooned in a leaden body wracked with pain? How do people cope? What makes them still have vitality and love a thirst for life? What keeps them so upbeat that it makes you incredible ashamed of your ever increasing needs, we need more than to be heard and to be listened to.

Naomi was forced into a get better by increasing small movements and can be seen in Voices from the Shadows http://voicesfromtheshadowsfilm.co.uk/welcome/reflections/

She has been left disabled, in pain and forgotten by the medical people that harmed her.

Caryn was 14 when she fell ill, sleeping mostly for the next couple of years. She was a little better from the age of 19 to 21, and then became bedbound after another illness. Her family has left her because of the continual misinformation portrayed by medical professions at Bath lead paediatric who researches ME/CFS Crawley, as in recent days with the enrolment of children for the MAGENTA trial; this idea that you can robustly increase yourself better with upbeat determination, is going to cause more children to be left in this near end life state, which, for some goes on for years.

These normal conversations that run on Facebook, the ones we dismiss out of hand, are where those who cannot be involved in normal life, go to have some normality. It can be proven that for a ME sufferer normal movement is the same as an athlete running the three minute mile. It takes a three hour battle just to enable some ME sufferers to sit up-right; some cannot sit due to their body not being able to tolerate an upright position. Each of these feats the one minute mile and sitting up, is a marvel of the body’s ability to battle against all odds, but ME suffers are treated like modern-day lepers, no one wants to know or be associated with them. If they try to tell their story or question the rational of trials, here in UK they are ridiculed beyond endurance by all news/media and doctor forums led by the researchers of the PACE trial.

On one of the odd occasions Naomi was able to connect on FB, she popped on my screen. It is always a joy to see her upbeat pictures and gentle wit. She is my hero of endurance. There on my screen was a message from Caryn, who quickly became another Hero. I haven’t changed much in her message, you can tell when her energy is low her spelling goes, and I know from experience how embarrassing that can be:

I am very similar to you. I live in the dark. My mobile is on a dim light. I can move my finger on my touch screen phone. I can squint my eyes to look. But I cannot talk as such very much. Very noise sensitive. I hardly ever have back ground noise like a T.V on. I love music. I often share a song on facebook I can’t listen to. So I don’t forget I love it, encase you see the same songs even if I don’t reply straight away. You are so strong.

Naomi replied:

Thank you Caryn. I feel very fortunate as I’ve improved from the level you’re at, and have some quality of life now. (Not by normal standards, but very much so in comparison to where I was) I know its absolute torture where you are. Surviving that is the real strength.

Caryn replied:

Thanks. I am happy you are bit better than you have been.

A simple loving conversation to support, by two people who wait a whole month to converse, hold that thought, in what state would your mind be in, if you were in their situation. Not able to reach out for your phone and be part of the world. Enclosed, cut off, abandoned by society, because they have been told they are “the undeserving sick” Yep that was actually said by the PACE trial theorists. Both these ladies have been ill for 10+ years! 10 years of living in this sort of confined pain.

Crawley believes this illness is started by an infection of some sort, and either a belief you are still ill, or you have not got enough sleep at night or exercised to keep your body fit, is why you are still behaving like you are ill. Could these two things be the only reasons that are keeping someone so ill? Now I ask you, does that seem right? Remember Crawley does no tests on these children even now proven evidence that ME patients bodies are fighting hard to survive. We hear of no other research that proves ME is a complex multi system disease, with a strong neurological element. Julia Newton has done some excellent work and Rituximab trials are exciting researchers worldwide, with our own Jo Cambridge doing some sterling work, but we don’t hear about this in the News or from the mouths of doctors, or on any interview?

My last conversation with Caryn who is all alone in the world:

And her having fun

Jess is another inspiration that could be helped with the new and upcoming research around the world, but she would not get better with MAGENTA trial:

https://www.youtube.com/watch?v=4AkStAwGQck

In the last few months I have heard of several cases where the hospital has rang the mother and this is the sort of conversation we as mothers have to put up with ‘they said it was ridiculous that I thought I couldn’t take my child to the appointment and what did I imagine would happen if I took her’

The mother was reported to her GP, who has referred mother to social services. Unfortunately it is impossible to put in complaints regarding child protection, as I have been informed responsibility lies with the person who made the referral. You as a parent have no one and it seems no rights. I don’t think Association for Young ME Suffers would want to help, against one of their medical advisers or the hospital they work with. So the battle still goes on.

There are no figures kept and unlike other abusive behaviour you cannot track who makes the allegations and how many they have made against innocent parents or how many are unfounded. Tymes Trust, kept busy and are the only safe option for mothers now. They are stretched to full capacity.

Dr Speight was taken to the General Medical Council, one doctor who has stood up for children who have been medically abused because the NICE guidelines are too fluid and can be abused.

Over 200 children are being recruited for MAGENTA trial and Yet Crawley does not know what is making the children ill, or how to diagnose ME, has no severe patients and asks what recovery is? Would you trust this sort of approach? Would you like to know all information before your child was put on a trial? Would you be suspicious if you were told not to investigate the facts? She says no harm will come to the children. Will these children get hidden like Naomi, Caryn and Jess? Will Crawley take full responsibility for the harm done to the children who partake in this trial, or will she be able to hide the information like the SMILE trial.

Mothers have sent petitions to AYME but they don’t respond, they take their messages down and we are gagged by every means possible, including hidden threats like the one given out for MEGA trial ‘You will be sorry if our trial does not go ahead’. Then in the media there is a rally call of so called nasty comments left on social media by ME sufferers. 

I ask you what would you do, if your child was harmed and were told to not tell the truth and keep harming them with the wrong treatment so social services don’t take your child away. Would you let the perpetrators keep harming brave children that just want a life, any life, other than at home on their own unable to play? As any parent I need to fight, is that wrong?

I am one of those 25,000 mothers. I am under threat every time I call a GP because my son is in pain or ill, or ask for tests even though it took 2-3 years to get diagnosis of coeliac or POTS, which as I had suspected came back positive. My son suffered an episode in the GP surgery of what I now recognise as PoTS and was rushed into hospital. Later I was made to feel foolish, even though it was not me that asked to go to hospital? 

They do not want to label a child with EDS they say, even though this condition is associated with ME and can have life threatening consequences, because the medical profession do not like the illness! All parents want is a proper diagnosis to support their child and regain their health.

Just a point of interest the PACE trial theorists say that allergies are the modern society’s way of blaming devils, apparently their theory is we need devils in our lives to blame, and you want me to trust them?

Do not forget ME

I just had a reply from BBC standard reply and no return the funny thing is they quote the same abusse on Wesssley and only one research paper in 2015 on Mady hornig as balanced reporting. 5000 + papers and research on ME and only one? Two on the harms done to researchers, says it all does it not BBC.

BBC its the same old stuff as PACE? Mixed researchers where or are they? Getting ready for MEGA already? Discussing ME is TOXIC? From which side/

Ebola only one person in UK gets funding and research. 250,000 people with ME 25,000 children and they get PACE trial and MAGENTA? With small studies thrown to Julia Newton, just to show willing?

Dear Mrs Rodwelll
Many thanks for getting in touch about BBC News.

Whilst we’re disappointed to learn that you were unhappy with our coverage, we'd clarify that this is the largest clinical trial of an intervention in Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME) and is being directly funded by the National Institute for Health Research (the research wing of the National Health Service). This makes it a significant story.

Our coverage has been a mix of why the researchers have decided to undertake the trial and the personal experiences of patients (particularly children) with the disease. The Association of Young People with ME – a charity that represents children with the disease – and the UK’s Medical Research Council both say there has been a lack of attention given to CFS / ME and that this trial is needed.

The BBC cannot ignore stories like this and has reported a broad range of CFS / ME research - including striving to find a biological cause in www.bbc.co.uk/news/health-31644618; the difficulties along the way in www.bbc.co.uk/news/health-15017660; the threats sent to people researching the field in www.bbc.co.uk/news/science-environment-14326514; and why discussing the disease has become so toxic in www.bbc.co.uk/news/health-14883651.

We hope our reply here helps to clarify our approach. Many thanks once again for taking the time to get in touch.

Kind Regards

BBC Complaints Team
www.bbc.co.uk/complaints

NB This is sent from an outgoing account only which is not monitored. You cannot reply to this email address but if necessary please contact us via our webform quoting any case number we provided.

Humm so are they 

Invest in ME are pushing for a Biomedical Center in the UK and have had to fight every obsticle, they are also doing a lot of biomedical research that if shining a light on this illness. If you can just give a pund I would be very greatful.

https://www.justgiving.com/fundraising/Tilly-Moments

We Will Never Give Up Or Give In

We Will Never Give Up

Or Give In

‘She who will not be named for fear of bursting a blood vessel, has only gone and copied in the GP, paediatrician, CAMHS, school and a load of other people who will be breathing down my neck for explanations! School have already rang to see when can they expect Sian back in school. The sheer stupidity of it, it states and I quote that “Sian can manage 3-4 hours high energy activity per day without increasing her fatigue!” How the bloody hell does she know that? I told her fifteen minutes four times a day is all she can manage, add that up by my reckoning it’s an hour. Brushing her teeth on a bad day can zonk her out! You go to these professionals and you wonder if they have any ears, because they sure don’t listening to what we say, and they must have grey fuzzy bits instead of working brain cells! Dr Ramsay in 1986 listed the criteria for diagnosis of ME and now the researchers are getting the technology to prove it all, and still the psychobabble twaddle lot, gets heard above reality.’

Carman had opened the chilled bottle of Prosecco, the neck of which she tightly squeezed and twisted cork harshly, as she handed the letter over for inspection while she grabbed the flutes.

‘Four years ago they proved that the heart rate and blood pressure was down to ME and not deconditioning, the harms that bloody PACE trial did, is still doing.’ Becky said as she scanned through the letter, and her shoulders sagged as small whimpers of condemnation escaped. With each little escaped concern, Carman’s shoulders lifted, her back straitened and her normal resolve restored.

Becky went to speak a couple of times, but had to rethink and squirmed in her chair as though this would shed some light on the perplexity her mind was in. Intently Carmen looked at her friend; they gulped on the wine in syncretisation, quenching their joint indignation.  Carmen trying to calm down, intently looking at her friends facial reactions; Becky would never make a poker player Carmen thought, as she refilled their glasses.

‘What meeting is this devil woman talking about?’

‘The one we went to last week!’ relief flooded through and warmed Carmen’s aching limbs that were tightly coiled round her dismay.

‘See Becky, there is no explanation of what high energy activity is? So those muggles will now think Sian can go to school - hence the phone call. Sian can’t even cope with full daylight now.’

This was like a punch to Becky, she had not realised things had got this bad, hopefully she thought it was just going to the hospital and the journey that had brought this on, and she would recover given time.

‘They assured you that high energy is sitting up for Sian at the minute, and not to worry.’

‘I know, but reading down they also go on about shopping as being a good social integration and will support her back into school? The hurtful thing is it’s her favourite thing in the whole wide world to do, you know how she is with designer clothes, she collects them like stamps, it’s like putting needles under her finger nails and telling her to cope, as her nails pop off one by one.’ Exasperation dropped from both their shoulders.

‘But we explained all that. Oh honey your wizards don’t use their wands’ Becky’s flabbergasted reply needed quenching, she took an angry gulp of wine. At this rate they will both be seeing double shortly, thought Becky, as she tried to focus her mind on the letter in her hand. But reading down the words and their implied meaning, just did not make sense. She could forgive someone who had never been involved with Myalgic Encephalomyelitis, god knows ME is a multitude of complexities, but for a so called professional, this letter is disturbing as it is disgusting, she obviously did not understand severe ME.

‘We don’t have wizards, we have muggles, the worst kind of muggles the ones that think they are wizards! When will your wizard be back in action?’

‘The General Medical Council are taking their time, they need to think carefully they say.’

‘What are the Dark Lords trying to hide this time?’

‘Who knows! It’s like a fairy-tale nightmare; muggles find it hard to believe. Unless you have lived in the world of so called medically unexplained illness, only it’s not medically unexplained is it. Four years ago they dispelled that myth of deconditioning. Medically unexplained my deodar, not looked for because you are labelled “the undeserving sick!”’ Becky blew-out through her relaxed lips that expelled soft pillows of air, as she threw the letter down.’

‘That theory was promoted by the dark Lords of psychobabble so a political battering ram could be used by Department Work and Pensions, now the cuts can go through?’

‘It’s just so wrong, remember the hours our girls spent looking at stuff on line to occupy them while they were both so poorly. It was their only joy. Their need to shop at all cost was the one thing that convinced me the psychological element to ME had very little to do with them. Physically unable to live gave them emotional consequences of being SadMad, that dragged them down on the odd occasion, but that was as far as it went. Rather remarkable considering what they were missing out on. The support they gave each other was amazing. That reminds me Beth is coming home next week from Uni and wanted to know if she could come and see Sian?’ Becky could see the pain through the warm smile and regretted her lack of tact. Maybe half an hour or so?’ Gently suggested Becky, ‘She could dry shampoo Sian’s hair make her feel….’

They both took a large gulp of wine, her and her big mouth thought Becky.

In the early days of Fiona’s illness she could remember feeling jealous of Carmen and Sian. The odd time they would go out to a shop, had felt at that time like a knife was being inserted and twisted inside her. Now the reverse was true and how do you cope with that? What the hell can you say to make things a little easier?

‘Have you managed to get out lately? Bite your tong off you over large buffoon in a tutu, Becky shouted at herself.’ I should know better than that, sorry.’ She thought as she sipped, how the hell can Carman go out while Sian blacks out and has nose bleeds all over the place? You prize pilchard, if someone had said that to you, you would have flattened them with a lashing of your tongue.

The tears close to Carmen’s lips were drowned by prosecco; the lightness of its flavour, easing away her need to escape.

‘What I would not give to be spending a fortune on clothes right now, just looking on the internet with Sian would be a joy. They quote socialising twice, did you notice?’ she pointed to the letter ‘and as one of her main targets. For the love of fluffy ducks! Out with friends coping with the lolling around talking frenzy of teenage girls, is just unthinkable the consequences of all these things would put her back weeks, let alone trying to do 4 hours a day!’ Carmen realised what she was saying and looked across apologetically at Becky, who she could see was pained by her earlier suggestion ‘That does not include Fiona, Fiona understands and will...’ Carmen turned round to unnecessarily tidy the work tops. ‘Bless ya, I know you are both desperate to help. But sitting up for Sian is high energy these days, her blood pressure and heart rate goes on a roller coaster ride all of its own. Having to go down stairs is like a Tibetan mountain hike, with all the organising that goes with it, pity there is no shirker, I could do with a shirker.’ Forlorn she put down the bubble filled flue, with a cherry bobbing around the cool fizz and both women giggled into the sadness, their memories floating on the bursting bubbles of time.

Becky did not need telling how body destroying this illness was, and the impact on someone who was suffering like Sian; her daughter had been hit hard by glandular fever for a couple of years, but the two girls treatments had been pols apparat and none of it made sense.

Unlike Fiona, Sian had heroically carried on, while her daughter was flattened by the virus from the very start. When Fiona had pads over her eyes as the daylight felt as if it was burning through to her brain, Carman had stood firm and more or less carried Becky through the bleak times, with her humour, wit and determination.

There was a year where the girls were at the same level of illness and although couple of years apart in age, they supported each other through Skype and the media of the youth. In those days they were mostly bedbound and yet Fiona picked up and started to recover slowly, with dips and troughs, but a steady rise in ability and yet Sian, who had been stronger at the beginning, just kept the same, no increase in stamina. It was like watching your friends family have a slow car crash that you could not stop or avoid, whatever you did.

Unlike Sian’s, Fiona’s GP and paediatric never pushed and explained how long it could take to recover. They had a system in place that wrote letters and talked with the school, organising Occupational Therapists, getting a disability badge which was a god send to enable Fiona to go out. Becky had none of the letter writing that Carman has the five folders full of reports and letters stood to attention near the phone. All the time Sian just kept slowly detreating, it was shocking. She had no tests and Becky could never understand the rational of her medical team. When they had gone to the hospital last week, it had seemed as though some understanding was reached over the seriousness of Sian’s condition, but this letter was a worry.

The conflict of emotions she felt over seeing her dearest friend’s daughter fight against this hideous illness, the same illness that her daughter had gone into remission from. Fiona had struggled through school, but they were always gentle and kind with her, made to understand by the wand of the greatest wizard. Now she was at Uni; admittedly not able to partake in a full Uni life, but had some life, was deeply painful for her. She felt as though her heart was being wrenched out, and the guilt was over whelming.

‘Oh I almost forgot; your YouTube video has gone viral!’

‘What YouTube video Becky?’

Cautiously and with apprehension, she screwed up face as though a blow would be administered at any moment, Becky explained.

‘The one we made last week, when we did the ME challenge. You know how many times you can say Myalgic Encephalomyelitis while sucking helium and being paint bombed’

‘But I couldn’t say it, and we gave up’ Carman stunned expression was a joy.

‘I know.’ Becky broke out in a girlish grin, widening her eyes and raising her shoulders in excitement! ‘That’s what made the clip so funny; they seemed to like middle-aged women pratting about- look we’ve had…’

Carmen had snatched the phone and started to play the clip, at first she winced. Seeing herself in a Victorian bathing costume with a duck inflatable was a little distressing, she really must go on a diet. The shower cap with its sparkle was over the top. She most definitely looked like a pantomime dame. When it came to the part when she was trying to suck helium, being shown by Becky, who was also dressed in the same attire, they started to giggle together heads resting on one another. Her trying to focus on saying the difficult words with a tongue that was semi paralysed by prosecco was hilarious, she had to admit. Sian was maliciously setting off the paint bombs trying to get them in the faces, from her wheelchair. Carmen did not know whether to be annoyed at her stupidity or proud that she was brave to keep going, what harm could a little fund do? The smile Sian had on her face was worth the payback, and when she is able to watch it will give her endless fun.

Her embarrassment was nothing really, no one would know who she is, and those that did would enjoy the spectacle. It would be worth it to get some understanding of this illness out there, even in a small way.

When she looked at the mega amount of hits, it blew her mind, and when she looked at the “Just giving Page” it was heart-warming. People can be so kind.

‘Like you said at the end Carmen’ Becky put her arms around her friend, who she was so indebted to and admired from every angle. ‘We never give up, we will beat this!’

For the first time in five years, Carmen really did believe it!

If you can just give a £1 to my just giving page so that people with ME get the research needed to stop this illness from robbing 25,000 children of any fun in their lives. 

Thank you

https://www.justgiving.com/fundraising/Tilly-Moments?newPage=True