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Influencing With Integrity When Your Child ‘Has Been Sick For Too Long’

by Nancy Blake(more info)

listed in cfs me, originally published in issue 256 - August 2019

 

Health care providers should not dismiss the lack of school attendance or participation in activities
in these patients as merely school phobias or having overprotective parents.”[1, p 262]

You have a child with ME/CFS.  She has now been judged to have ‘been sick for too long’, and you are involved with the education system, the medical system, and possibly with social services. This article provides you with ethical ways of influencing everyone involved to do what will be best for your child.

 

Rule One:  Be unfailingly courteous and kind to the person you are dealing with.

Consider their situation. Assume they are doing their best in the circumstances that you are all caught up in.  Try to make sure that each contact with you is rewarding for them.

If every phone call, every visit with you makes them feel understood and appreciated, you can become the person they will pull out all the stops for, make exceptions for.

Sadly, if you are reading this kind of article, you may already be locked into what feels like a losing battle with agencies determined to enforce their will against you.

The advice to ‘be nice’ will sound beyond ridiculous, even deeply offensive.  And much too late.

But desperate situations call for desperate measures:  When your evidence, information and rational persuasion are being disregarded, it is sensible and morally responsible to try other ways to prevent harm to your child. 

In doing so, you will also be performing a service to those who might, knowingly or unknowingly do harm by following guidelines and protocols that are inappropriate.[1]

The official policies towards people with ME/CFS, and the parents of children who have ME/CFS, in the NHS, the DWP, the Department for Education and the Social Services are based on the biopsychosocial (BPS) model of illness which holds that this illness is a product of psychological and social factors, not a genuine medical disease. 

According to the 2015 report by the US Institute of Medicine (now the Academy of Medicine, ME/CFS is “not psychogenic”, and is defined by the fact that “exertion of any kind -  physical, cognitive or emotional -  can  adversely affect these patients in many organ systems and in many aspects of their lives.” [1, Recommendations, p 11]

Yet the NICE Guideline for the Treatment and Management of ME/CFS (CG53) [2] discourages too much rest, and presents Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) as the only evidence-based, safe and effective treatments for this illness.

This means that, however well-intentioned the individuals we encounter within this system may be, they are acting on the basis of the bad information and harmful guidelines with which they are provided.  (A recent survey has shown that the majority of ME/CFS patients treated according to NICE Guidelines get worse as a result of the treatment.[3]

Impact of Graded Exercise Therapy

https://www.meaction.net/2019/04/03/get-and-cbt-are-not-safe-for-me-summary-of-survey-results/

 

In fact a few of the individuals you encounter may already be distressed by the ill-effects and harm they have been forced to be party to, and may even come to recognize you as an ally in the same cause.. to prevent the harm the official guidelines and protocols can do to you and your child.

Others will simply be following the rules, seeing you and your concerns as harmful to your child, and be determined to win the power struggle between you. 

Whichever it is, continue to be courteous and kind.  People imposing unwanted actions on others are used to protest and anger.  Kindness really does change the game!

 

Nancy Blake 256 Tug of War

Unequal Tug-of-War:  What Happens When You Let Go of the Rope!

 

Rule Two:  Signaling Submission:  The Power of ‘Giving In’.

The boys from my son’s band are arguing loudly in the back of the car.  it’s a lovely day, I’m careening carelessly along the dual carriageway going into town, blithely under-passing a police car while exceeding the speed limit...blue lights, oh dear.

Cheery shouts of “Tell them to eff off, Mrs. Blake” as I get out of the car.

“Watch”, I say, having just absorbed advice from Desmond Morris’s best-seller, The Naked Ape. [4a]. Which is:  In order to reduce aggression, go onto the aggressor’s territory and act submissive.

Whizzed over to the sternly waiting officer, already out of his car, pencil and notebook at the ready.

Assisted by the fact that I am small, female, and have blue eyes, I went into Terribly Apologetic mode. “Officer, I’m so, so sorry!  The boys were fighting in the back and I just wasn’t thinking.  I’m so sorry, I know you’ll have to book me”.

After nothing more than a lengthy warning about what would have to happen ‘next time’ from the officer, and effusive further apologies and promises never to do it again from me, I returned to the car.

“Did you tell them to eff off, Mrs. Blake?”

“They had all the power, and I had just broken several laws.  All they did was tell me not to do it again. Who do you think won?”

(A footnote to this saga is that the one who had been urging me to ‘tell them to eff off’ the loudest subsequently tried out what I had done, and it worked for him too.)

I tell this true story to illustrate the power of behavioural signals which are embedded more deeply than rationality and language. 

Jordan Peterson[4b] with his hierarchical lobsters, is not the first to point out that long before the evolution of reason and language, species survival depended on social organisation; social organisation relies on communication.

The fights between members of social groups which establish hierarchies, territories and mating rights need to end before the fatal injury of either of the participants. Fans of wild-life programs see submission signals in every species from insects to grizzlies.  Heroic survivors, from  dare-devil snake handlers to the male black widow spider, survive by avoiding the move that would trigger attack.

(The dog on its back, exposing its belly, wagging its tail, is signaling disarming vulnerability. The cat on its back is in the best position to grasp its opponent and disembowel it.  ‘Submission signals’ can be misleading.)

The fact remains:  Submission-signaling has an impact that runs much,
much deeper than rational persuasion.

 

Blake 256 Cat and Mouse shutterstock_70392409 (1) 650x388px

 

The Power of Submission Signalling

Licensed from Shutterstock

 

Negative Injunction - Proactive submission!

I told the pencil-waving policeman that he would ‘have to’ book me.  He should have, and probably intended to...but he didn’t.

It takes courage to tell a person wielding the power to harm you that they will ‘have to’ do the very thing you are desperate to prevent.  

But by doing so, you have flipped their exercise in authority over you into a form of obedience to you...a psychologically intolerable position for a person driven by the need for ‘power over’.

You are in a situation in which guidelines, protocols and legalities can require your child to attend school when she is too sick to do so, engage in harmful treatments, or even be taken into care, with compulsory admission into a psychiatric ward.

At earlier stages, getting to know all you can about the requirements and pressures on staff of the agencies who are dealing with you can help you align your goals with theirs, which I will discuss further on.  But if you are already at the stage where legal force is threatened, you need to take the bravest action. 

You will already have used every argument, bit of evidence, means of rational persuasion....and appeal to sympathy.  None of it has helped.

If they are already going inexorably down the path of compulsion, nothing you do will make it worse...you can afford to be fearless.  Agreeing with them feels dangerous.  But....

At this point, I urge you to listen carefully to their reasons, learn all you can about the guidelines and protocols that tell them these actions can and must be taken...and recite them back to them.

“I can see that because of this (protocol, guideline) you will have to (take the action you want to prevent)”.

“You really have no choice.” 

“There aren’t any alternatives, or none that you are allowed to take.” 

“You can’t really do anything other than this, can you.” 

“I realize that you are powerless in this situation.”

They have contradicted everything you have put before them, up to now.  Now let them contradict this.

Hopefully, things haven’t progressed this far.  Here are some more examples of submission-signaling:

Getting the ‘no’ sayer to say ‘yes’.

There were six of us who had driven a long way to see a school play.  Unexpectedly, the place was packed, no seats available.  Quizzing one of the staff, I was told it was unlikely that anyone who had booked tickets would fail to arrive, that there were no seats available on the basis of having been invited by the cast, there were no seats set aside for journalists who might not show up.....

With this information, I approached the person in charge. She was clearly ready to say ‘no’ to any suggestion we might make.  I told her that we knew there were no seats available. ‘Yes’.  And that it was unlikely that people who had booked tickets wouldn’t arrive. ‘Yes’.  And that knowing the cast wouldn’t make any difference. ‘Yes’.  And that there were no seats set aside for journalists.  ‘Yes’.  So there’s no chance that we will be able to get in. ‘Yes’.  We’ll just be waiting outside in the hall, but we know there’s no chance.  ‘Yes’.

Having elicited six ‘yeses’ from the person prepared to say only ‘no’, we waited.  And were notified of six empty front row seats just before the curtain rose.

“I know that my child has been ‘sick too long’.”  “I know that the school is under pressure about attendance records, league tables.”  “I know that it is hard to believe that an illness can go on this long.”  “I know that you will be thinking that it must be just psychological.” “You must be beginning to wonder if the care I am giving is perpetuating my child’s illness.”  “I understand your concerns.”  “It must be really difficult to be in your position.”  “I wouldn’t want to have to make the decisions you have to make.”

(You know how hard it is for them to agree with you......some people really can’t take ‘yes’ for an answer.)

You are lying on your back on the floor, wagging your tail.....

Find ways to use the power of saying ‘yes’:

Back to the heady days when my son and his friends in the band needed transport, and they all had a key to my old wreck of a car.  It was three in the morning when the police rang to ask me who might have been driving it, as it had just been backed over a lamp post in the park and caught fire.  No one else had been involved, no one had been hurt, and they had the driver in custody, but he was refusing to give his name.

It turned out that it was my daughter’s boyfriend...she had left the group early and gone back to her flat, but she wasn’t answering the door, and they weren’t sure whether she was there or not.. he had been driving frantically around the deserted park, looking for her... and performed a badly miscalculated three-point turn.

Refusing to give the police his name seemed to me to be another serious miscalculation, and I felt strongly that it would be better all-round if he was the one to do it, not me.   However, refusing to cooperate with the police is a crime in itself.

The solution was to avoid saying anything to the police which could constitute a refusal:  the form of words I used was “Yes, I will be glad to, as soon as I’ve had a chance to speak with him myself.”  Continued reiteration of this formula eventually resulted in my being taken back to the station and given a chance to speak with him....

It is essential to avoid being labelled ‘an uncooperative parent’.  When something is suggested that you know will harm your child, try to find a way to say ‘yes’:

“That sounds really interesting, I’d like to learn more about it...”.

“I’d be happy for you to explain it to me fully / see the research evidence / talk with a parent who’s child has been helped by this/ encourage my child to consider it / try it out after we’ve had a chance to see if what we’re doing at the moment is helping / we’re already doing a bit of that and some of it is really helpful / we’ve heard it can be offered over the internet, could we try it that way?”

You can be genuinely positive about trying things out at home (“we can start now, if we can do it at home even before she is well enough to go for treatment at a centre”), because the more your child can rest, the better chance there is of improvement. 

This means that you can genuinely be enthusiastic about and willing to try out (at home) any element of treatment that can be done while the patient is minimizing exertion (lying down!). 

 

Impact of Cognitive Behavioural Therapy

 

https://www.meaction.net/2019/04/03/get-and-cbt-are-not-safe-for-me-summary-of-survey-results/ [5]

 

Patients often find that relaxation techniques, mindfulness, supportive psychotherapy (‘just resting and letting others take care of you is the best way to fight this illness’) can be helpful.

(As for ‘going for treatment at a centre’.....no need to spell out your thoughts on how long it might be before your child is ‘well enough...’)

The more positive you are, and the more things you are positive about, the less you will inspire, or provide justification for efforts at compulsion.  It’s not easy to start an argument  with someone who is being so agreeable.

Rule Three:  Shift Your Perspective on Your Place in the Power Structure:  Help Them Tick The Boxes They Have to Tick.

My friendly, fluffy sheep-dog on short legs, accompanied me everywhere, and had usefully learned to pull me along in my wheelchair when I was using one.  In my role as head of the social-work team in a hospital that was spread over a large campus, Muttley had been enthusiastically welcomed by patients and many staff, especially in wards for the elderly. 

However the authorities, in an era before the usefulness of ‘patting dogs’ in such wards had been recognized, were not pleased.  I got a stiff letter from the Hospital Director telling me that my dog was not welcome, and I was no longer to bring him to the hospital.  I wrote him an immediate reply, apologizing for my unprofessional behaviour, agreeing that the presence of a dog in the hospital was clearly unacceptable, and assuring him that I would no longer bring the dog.

I then carried on exactly as before, with no further objections. 

The Hospital Director needed to be seen by the people above to be in control of what happened in the hospital, and to be conforming to the rules.  I had provided him with written evidence of that control.

Find out as much as you can about the organizational position of the person you are dealing with. 

We know that anyone working face-to-face with clients in the public services in the UK today is overworked and underpaid.  Agencies are underfunded and understaffed, while being required to meet impossible targets in impossible time-frames.  The person who is dealing with you is already stressed.  You need to help them.

 

A smile can be heard over the phone.  Smile!  
Both you and the person you are talking to will feel better. 
Whatever it is, and whoever it is, you both need to feel better!!

 

A more formal way to think about the shift you need to make is to move from feeling like a victim of the rules they have for you, to feeling like someone who is trying to help them manage the rules that others have for them.

The NHS

Your doctor is the person you go to for help...the power relation is that of a supplicant appealing to a higher authority.

Study the NICE Guideline CG53,[2] for care and management of patients with ME/CFS.  Once you know what doctors are told they can, must, and must not do, you are in a position to collaborate with your doctor in finding a way to keep within the strictures placed on her while doing the best for your child.

Doctors who treat ME/CFS patients successfully outside the recommendations of the Guidelines can find themselves in front of the GMC on a complaint of malpractice.  This complaint won’t have come from a patient...it will have been made by a professional colleague policing the rules.

You know that complete rest is what your child needs.  But ‘complete rest’ is on the list of things your doctor may not recommend.  ‘Supported home management’ is a form of words that could keep him out of trouble.

There is a current movement encouraging doctors to save time by practising remotely.  Encourage your doctor to use you and your child as an experiment in ‘home management supported by internet communication’. Your doctor is overwhelmed with demands on time and funds.  She has ten minute appointment slots within which to make a diagnosis and suggest a treatment, which she hopes will make the patient better. 

In the US, doctors get paid per visit.  A chronically ill patient can be a gold-mine, but only if they are covered by insurance, or have private funds - until those funds run out.

In the UK doctors are allocated NHS funding per patient on their list, which is then used to pay for the premises, staff and other costs.  This means that a frequently-visiting, chronically ill patient who does not get better is a drain on time and resources, in a time- and-resource-starved system.

More fundamentally, doctors do their arduous years of training because they want to be able to make sick people well.  They have no simple diagnostic test and no effective medical treatments for ME/CFS patients, who keep coming back, asking for tests and treatments, and not getting better.  No wonder we attract so much hostility...we are a conscientious doctor’s worst nightmare. [6] http://www.positivehealth.com/article/cfs-me/me-cfs-advice-for-2019 ]

Except for the even worse nightmare: parents of a child with ME/CFS!  Your child is sick, and not getting better.  You are increasingly worried, to the point of desperation.  Of course you want your doctor to do something that will cure your child.  But there is no effective medical treatment for ME/CFS, and the options available will make your child worse.  (The paradox of ME/CFS is that the less medical attention your child receives, the better his chances of improvement.)

The more you demand of your doctor’s time and resources, the more passionately you ask her for something that will help, the more frustrated you both will be.  The worst case scenario is that your doctor decides to get rid of the whole problem by giving a diagnosis of FII - Fabricated or Induced Illness.[7] https://www.nhs.uk/conditions/fabricated-or-induced-illness/#

This diagnosis assumes that the mother, through over-concern and a desire for attention, is creating the child’s illness.  Previously known as ‘Munchausen’s Disease by Proxy’, it is an extremely rare psychiatric disorder.  However this diagnosis has become part of the psychiatric tool-box for keeping people who have ME/CFS within psychiatric control. Doctors are encouraged to give this diagnostic label to parents, usually mothers, who are providing the high level of care and protection absolutely required for child very ill with ME/CFS. 

This diagnosis changes ME/CFS from a serious illness requiring detailed physical care into a supposed Child Protection issue in which it is essential that the child be removed from the parent who is ‘creating the illness’.  See  [Appendix: NICE Guidance on FII] for more detail on this diagnosis, and thoughts about how to avoid it or challenge it.

This link takes you to an important resource: [8].  https://www.tymestrust.org/pdfs/falseallegations.pdf

One of the main functions of the advice in this article is to help you find ways to prevent your situation ever reaching this stage.  It will benefit both your doctor and your child to minimize your contact, while remaining courteous and calm, pointing out that you trust your doctor to do the necessary exclusionary testing, that you recognize there is little he can offer to a patient with ME/CFS, and that you would like to minimize demands on his time (while of course being respectful of his advice), and just see if your child can begin to get better with a minimum of intervention.[6]

Other diagnoses used to pass ME/CFS patients from a medical to a psychiatric arena are Medically Unexplained Symptoms  [9.    http://www.positivehealth.com/article/cfs-me/medically-unexplained-symptoms-diverting-5-year-funding-from-mental-health ] and Functional Neurological Disorder [10.    https://www.neurosymptoms.org/ ]. Again, the best way to avoid this is to be courteous, respectful, and have as little contact with your doctor as possible.

The Department of Education

Setting out the shift you need to make in relation to the Department of Education.

As a parent of a child who is not attending school as much as his school think he should, you will be at the receiving end of the official document on the legal responsibilities of the parent to ensure your child’s attendance at school.[11] https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/581539/School_attendance_parental_responsibility_measures_statutory_guidance.pdf

Now go and read the official document on the legal obligations and procedures incumbent on schools concerning pupil attendance.  [12] https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/739764/Guidance_on_school_attendance_Sept_2018.pdf.   (A headmaster’s failure to comply can even become a criminal offence!). Now you know where the pressure on you, as a parent, originates.

You can stop identifying as the victim in this situation and begin to think of yourself as a potential ally of the head in making a plan for your child that can keep him out of trouble while providing the help you need for your child.

These documents can help you both:  [13.  https://www.gov.uk/school-attendance-absence  and 14.  https://www.gov.uk/illness-child-education ]

A central point is that what the law requires is that children of school age are receiving full time education, but there is no legal requirement that this be in a school.  The school has some requirement to make special provision for children with special needs, and can allow for absence or part-time attendance on medical grounds but is encouraged to limit this. 

(It is also possible to home educate, but schools are warned against trying to encourage parents to home educate a sick child to improve their attendance records...so there may also be difficulties for parents who want take a child off the school register into Home Education because of their health.)

It seems to me that it would be wise for a parent to express concerns about their child’s education as early as possible.  Asking for homework to be sent home when a child is clearly too ill to attend could lay the groundwork for continuing to receive help when the child is better, and code the parent as appropriately concerned about the child’s education. 

As it is ‘education’ which is required in law, keeping the focus on ‘educational activity’ (which a sick child, with support, would become able to engage in much before becoming well enough to resume attendance) and away from a focus on ‘attendance’ could help if you are in danger of being accused as irresponsible or unsuitable parents when you insist that your child needs more time to recover than the school feels it can allow.

Having established early that you are concerned about your child’s education, it could be useful to use research indicating that children with ME/CFS who are given academic support at home get better exam results than children who are pressured to attend. [15] https://www.tymestrust.org/pdfs/tthomeedhelps.pdf ]

But do get more expert advice about this...find out your school’s policies and practices in relation to children with ME/CFS, find out what your local advocacy/support groups have to say about the school, follow the rules outlined here in your dealings with them, and get further help.

Apologies to my readers for offering advice concerning a situation I have never been in.  I have managed life as a PWME for thirty years, and have been engaged in the business of influencing and supporting change in behaviour as a psychotherapist, social worker, manager and landlady trying to prise rent from the local authority.  (In that role, I started every conversation with “I know your software is a shambles, and that that other office never sends the paperwork you need, and no wonder you get headaches..”. My rents came through like clockwork when others landlords would have to wait for months.)

And my worst encounter was being assessed for disability when I still hadn’t learned that trying to be meticulously honest about what I could do on my best days would definitely go against me...I ended up in incoherent tears and had to ring my daughter for support.

The moral? 

ME/CFS gives no prizes to the virtuous, neither do the systems in place for us.  Figure out what actually works, and do that.   It helps if we can make it look as though it’s the other guy who’s winning!

References

1.   Beyond myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Institute of Medicine, Washington, D.C.; The National Academies Press, 2015. ISBN-13:978-0-309-31689-7. https://www.ncbi.nlm.nih.gov/books/NBK274235/    https://www.ncbi.nlm.nih.gov/pubmed/25695122

 P 11 of Recommendations: ‘After extensive consideration and mindful of the concerns expressed by patients and their advocates, the committee recommends that the disorder described in this report be named “systemic exertion intolerance disease” (SEID). “Systemic exertion intolerance” captures the fact that exertion of any sort – physical, cognitive, emotional – can adversely affect these patients in many organ systems and in many aspects of their lives. The committee intends for this name to convey the complexity and severity of this disorder’]

2.  https://www.nice.org.uk/guidance/cg53

3.  https://www.meaction.net/2019/04/03/get-and-cbt-are-not-safe-for-me-summary-of-survey-results/

4a.   The Naked Ape:  A Zoologists Study of The Human Animal, Desmond Morris, Vintage Books, Random House, London, 1997.  (Originally published by Jonathan Cape, 1967).

4b.  12 Rules for Life:  An Antidote to Chaos, Jordan Peterson, Toronto, Random House, 2018.

5.  https://www.meaction.net/2019/04/03/get-and-cbt-are-not-safe-for-me-summary-of-survey-results/

Topline findings
A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME report that cognitive behavioural therapy (CBT) led to no change in their physical health; however those who reported a change were more likely to experience deterioration than improvement. More than 3 times as many people reported severe illness after GET than before, and almost 2 times as many reported severe illness after CBT.

6.  http://www.positivehealth.com/article/cfs-me/me-cfs-advice-for-2019

7.  https://www.nhs.uk/conditions/fabricated-or-induced-illness/#

8.  https://www.tymestrust.org/pdfs/falseallegations.pdf

9.  http://www.positivehealth.com/article/cfs-me/medically-unexplained-symptoms-diverting-5-year-funding-from-mental-health

10.  https://www.neurosymptoms.org/    This self-help site produced by neurologists lists symptoms, one of which is ‘fatigue’, and that section mentions ME/CFS.  Posts on the FND Hope site show that many patients whose diagnostic label is FND actually are misdiagnosed ME/CFS patients being treated for a ‘conversion disorder.   

11.  https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/581539/School_attendance_parental_responsibility_measures_statutory_guidance.pdf

12.  https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/739764/Guidance_on_school_attendance_Sept_2018.pdf.

13.  https://www.gov.uk/school-attendance-absence 

14.  https://www.gov.uk/illness-child-education

15. https://www.tymestrust.org/pdfs/tthomeedhelps.pdf]

Appendix:  NICE Guidance on FII:  Fabricated or Induced Illness, Symptoms

https://www.nhs.uk/conditions/fabricated-or-induced/illness/symptoms/  

The list below is what your doctor and other professionals will use to give your child the diagnosis of FII, and provide justification for taking your child into care.  Use it as a guide to what you need to do/avoid doing not to get this label in the first place, and how to challenge it if you do fall victim to it.

“Warning signs

“A clinician may suspect fabricated or induced illness if, after carrying out examinations and tests, there appears to be no explanation for the child's symptoms (for more information, you can read the NICE guidance about when to suspect child maltreatment in under 18s).

They should also look out for one or more of the following warning signs:

  • Symptoms only appear when the parent or carer is present;
  • The only person claiming to notice symptoms is the parent or carer;
  • The affected child has an inexplicably poor response to medication or other treatment;
  • If one particular health problem is resolved, the parent or carer may then begin reporting a new set of symptoms;
  • The child's alleged symptoms do not seem plausible – for example, a child who has supposedly lost a lot of blood but does not become unwell;
  • The parent or carer has a history of frequently changing GPs or visiting different hospitals for treatment, particularly if their views about the child's treatment are challenged by medical staff;
  • The child's daily activities are being limited far beyond what you would usually expect as a result of having a certain condition – for example, they never go to school or have to wear leg braces even though they can walk properly;
  • The parent or carer has good medical knowledge or a medical background;
  • The parent or carer does not seem too worried about the child's health, despite being very attentive;
  • The parent or carer develops close and friendly relationships with healthcare staff, but may become abusive or argumentative if their own views about what's wrong with the child are challenged;
  • One parent (commonly the father) has little or no involvement in the care of the child;
  • The parent or carer encourages medical staff to perform often painful tests and procedures on the child (tests that most parents would only agree to if they were persuaded that it was absolutely necessary)”.

 

“Symptoms only appear when the parent or carer is present.”  It will seem natural to you to remain present when the doctor is seeing your child.  Make sure there are times when you are absent, and keep a record.  But medical staff are not above asking your child to exert themselves in your absence, so this can be a double bind.

“An inexplicably poor response to medication or other treatment.” A ‘poor response’ to GET could be used against you.

Try to avoid “reporting a new set of symptoms”.

You may very well have “changed GP / visited different hospitals for treatment”.. if you are tempted to do so, remind yourself that no doctor has a cure, and that most treatment recommendations are counter-productive.  Rather than seeking different and better doctors / treatments, try to stay under the radar. Other than asking for tests to eliminate other, treatable illnesses, assure your doctor that you want to minimize demands on his time and resources.  You understand that there is no effective medication for ME/CFS, and that a period of rest at home might be worth trying, rather than repeated visits to the surgery.  (But of course you are willing to cooperate with anything he might suggest!)

Limiting the child’s activities.  Not sending them to school.  These ‘symptoms of FII’ are necessary to preserve your child’s health.  See Appendix on dealing with education issues.

Good medical knowledge or a medical background ...you thought this would give you extra credibility.  But not so....these are on the list of ‘warning signs’.  Submission signals here...”I wondered if..”. “I’ve heard/read...”. Always in a tone of deference to the presumed superior knowledge of the professional.

Being friendly with health staff unless there is a disagreement.  See advice for avoiding any appearance of disagreement.. the power of ‘yes’.  And apparently the suggestion to remain courteous and kind should be exercised with a degree of restraint!

“One parent (commonly the father) has little or no involvement with the care of the child.”  If the father is the bread-winner and the mother is the carer, this is a common pattern.  Or is this code for ‘blame the mother’?  There is a clear gender credibility bias in general, and specifically in medicine.  Wherever possible, a woman should be backed up by a man.  The father needs to have enough involvement to avoid this particular ‘warning sign’, and be detached enough not to be labelled as a co-conspirator with the woman.

You clearly must do all you can to avoid getting into this Catch-22 scenario...a powerful argument for staying courteous while minimizing demands on doctors.

Appendix on Education

If things have reached the stage where legal action is threatened, seek legal advice.  A useful resource is the Tymes Trust.

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/581539/School_attendance_parental_responsibility_measures_statutory_guidance.pdf

Can a school place a pupil on a part-time timetable?

As a rule, no. All pupils of compulsory school age are entitled to a full-time education. In very exceptional circumstances there may be a need for a temporary part-time timetable to meet a pupil’s individual needs. For example where a medical condition prevents a pupil from attending full-time education and a part-time timetable is considered as part of a re-integration package. A part-time timetable must not be treated as a long-term solution. Any pastoral support programme or other agreement must have a time limit by which point the pupil is expected to attend full-time or be provided with alternative provision.

In agreeing to a part-time timetable a school has agreed to a pupil being absent from school for part of the week or day and therefore must record it as authorized absence.

Context of the school attendance measures

Parents are responsible for making sure that their children of compulsory school age receive a suitable full-time education. This can be by regular attendance at school, at alternative provision, or otherwise (e.g. the parent can choose to educate their child at home).

(From [12]. ‘Home Educated Children

“On receipt of written notification to home educate, schools must inform the pupil’s local authority that the pupil is to be deleted from the admission register. Schools should not seek to persuade parents to educate their children at home as a way of avoiding excluding the pupil or because the pupil has a poor attendance record.

“Schools and local authorities should not seek to prevent parents from educating their children outside the school system. There is no requirement for parents to obtain the school or local authority’s agreement to educate their child at home.

“Parents have a duty to ensure their child of compulsory school age receives suitable full time education but this does not have to be at a school.[10]

School Attendance Orders

If it appears to the local authority that a child of compulsory school age is not receiving a suitable education, either by regular attendance at school or otherwise, then they must begin procedures for issuing a School Attendance Order. The order will require the child’s parents to register their child at a named school. If they fail to comply with the order the parent can be prosecuted.

Prosecutions by Local Authorities

If a child of compulsory school age fails to attend regularly at a school at which they are registered, or at a place where alternative provision is provided for them, the parents may be guilty of an offence and can be prosecuted by the local authority. Only local authorities can prosecute parents and they must fund all associated costs. Local authorities should consider the Attorney General’s Guidelines for Crown Prosecutors in all prosecution cases.

You might make the point that resolving the issue another way would save money.

Local authorities must conduct all investigations in accordance with the Police and Criminal Evidence (PACE) Act 1984.

Local authorities have the power to prosecute parents who fail to comply with a school attendance order (section 443 of the Education Act 1996) or fail to ensure their child’s regular attendance at a school (section 444 of the Education Act 1996).

Section 444 has two separate but linked offences: Section 444(1): where a parent fails to secure the child’s regular attendance; and section 444(1A) where a parent knows that the child is failing to attend school regularly, and fails to ensure the child does so. Section 444ZA7 applies the offence to where parents fail to secure the regular attendance of their child at a place where the local authority or governing body has arranged alternative provision.

There are statutory defenses for parents to use under the 1996 Act.

The article does not say what these are, get advice about this.

Education Supervision Orders

The local authority must consider applying for an Education Supervision Order (ESO) before prosecuting parents. A local authority may apply for an ESO instead of or as well as prosecuting parents. The order is placed on the child and the local authority is appointed by the court to supervise that child’s education, either at a school, or at home for a specified period of time.

Appendix: Making Use of  Systemic Exertion Intolerance Disease (SEID)

Every move that is made to give Myalgic Encephalomyelitis a name that ensures recognition as a non-psychiatric disease is sabotaged by psychiatrists determined to keep it under their remit.

The name ‘Chronic Fatigue Syndrome’ purports to have been created to make psychiatric misdiagnosis less likely.  An undated letter from Strauss to Fukuda congratulates him on this name and the accompanying diagnostic criteria for creating a focus on the symptom ’fatigue’.  This, Strauss points out, will allow a research focus on the range of illnesses which involve fatigue, allowing the diagnosis ‘Myalgic Encephalomyelitis’ to ‘evaporate as a separate disease entity’, an outcome which he regarded as desirable. 

Over subsequent years, the CDC moved from ME, to CFS/ME, to CFS as diagnostic categories, which was a practical means to eliminate ME from diagnostic labels available to doctors in the US.  Now every patient in the US who had ME would be told that what they had was CFS, and might never even know that there was an illness called ME. 

The endless palaver over whether CFS is ME or not, or a subcategory, or ME is a subcategory of CFS seems to be conducted in the absence of knowledge that CFS is nothing more than a rag-bag created for the purpose of disappearing ME...CFS is a strategy, not a disease.

In the meantime, in the ICD classification wars, myalgic encephalomyelitis is listed as a neurological disease, G93.3.  This classification as neurological should make ME distinct from a psychiatric label.  But if a patient who has ME is referred to a neurologist, failure to pass a couple of diagnostic tests will quickly lead to diagnosis of  ‘Functional Neurological Disorder’, a new name for an old  Freudian concept:  hysteria...physical symptoms produced not by a pathogen or an injury, but by repressed emotional conflicts converted into physical manifestations.  Back into the hands of the psychiatrists.

Functional Neurological Disorders, which include ME/CFS and similar conditions, has recently been subsumed into the classification ‘medically unexplained symptoms’.   If your symptoms have not been ‘medically explained’ it suggests that further efforts should be made, through diagnostic testing and better research, to find an explanation.  But if you provide initial capitals: MUS, it magically becomes a psychiatric complaint, best treated with CBT and exercise.  A Functional Neurological Disorder.

The fact that people with ME/CFS rarely have a history that would make sense of a psychiatric diagnosis...no trauma, either in childhood or immediately preceding the onset of the diseases .... is not taken as a reason to eliminate a psychiatric diagnosis.  It seems that a history of academic, athletic and social success, followed by an apparently mild viral illness and then virtually complete physical collapse within a relatively short space of time just indicates that one can, relatively suddenly get a severe and dramatic  psychiatric complaint without any history to explain it. 

The much-maligned IOM Report refers in the introduction to “the misunderstanding that this illness is psychogenic”. 

This statement clearly means that psychiatry, psychiatrists and psychiatric diagnoses have no relevance to this disease. 

The first recommendation is that the term “Chronic Fatigue Syndrome” should be dropped.  They further recommend that this disease have its own classification “not related to chronic fatigue syndrome or neurasthenia”.  This is another clear dismissal of any involvement of psychiatry / psychiatric classifications with this illness. 

The fourth and final recommendation is prefaced by the statement that the central and defining feature of this disease is that “exertion of any kind, physical, cognitive or emotional, may adversely affect many organ systems...”

Systemic Exertion Intolerance Disease (SEID) is not psychological and it is not just neurological.  It is a disease in which exertion of any type can do multisystem harm...damage.  We aren’t just ‘fatigued’, and exertion doesn’t just bring on delayed fatigue, or even just ‘exacerbation of symptoms’.  It can do damage.. not just to one organ, or even just one organ system.. it can do damage to a range of organ systems.  Whatever the pathogen, the nature of the illness is that any type of exertion can do wide-ranging damage.  The fact that this damage is widespread, and potentially irreversible, is absolutely evident in the history of patients initially only moderately ill deteriorating into severe and irreversible incapacity as they continue, willingly or unwillingly, to exercise.

When this recommendation is stated so clearly and so decisively, what we must do it make sure that anyone who wants to pretend that this report is saying anything less has the actual statements put in front of them.

No, “exertion intolerance” isn’t just not feeling like running around the block.  It is that exertion can cause widespread damage to my body.  Protracted exertion can cause profound and irreversible damage to every system in my body.  We still need to find out the cause or causes but in the meantime, when exertion can do such harm, the most important things for me to do, for any patient to do, is to stop any form of exertion so as not to do further harm. 

Chronic disabling diseases in which exertion causes multisystem harm do need their own classification, by definition nothing to do with psychiatry, and with management approaches consistent with the definition...exertion must be minimized.

The clear statements in the IOM report need to be quoted, again and again, until they become common knowledge....they take us straight back to Ramsay’s diagnostic criteria and his treatment recommendation for complete rest from the inception.  For the sake of anyone who gets ME, this needs to become common knowledge.  The wisdom of the past was that when you got sick, you stayed in bed until you get better.  In the case of ME/CFS this is still true...and it takes a long time to get better.  When resting hasn’t seemed to help, it doesn’t mean that it’s time to get up, it means you need to rest for longer.

SEID is a weapon.  The report means what it says:  we need to make sure people know what it says.

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About Nancy Blake

Nancy Blake BA CQSW, has worked in mental health settings since 1971. She served as Chair of the ANLP PCS (now the NLPtCA), on a National Working Party developing postgraduate standards for Psychotherapy (NVQ Level 5), and contributed to the document which led to NLP being accepted as a therapeutic modality by the European Association for Psychotherapy.  She has presented workshops at UKCP Professional Conferences on an NLP approach to working with victims of abuse, and in psychoneuroimmunology.  Recovering from ME since 1986, she is the co-author, with Dr Leslie O Simpson, of the book Ramsay’s Disease (ME) about ME, as well as A Beginner's Guide to ME / CFS (ME/CFS Beginner's Guides). Both titles are available both in paperback and Kindle formats on Amazon. Nancy was previously enrolled at Lancaster University in a PhD doctoral program; her thesis topic was Conflicting Paradigms of ME/CFS and how the Psychiatric Paradigm creates its Influence in contrast to the Medical Model. She may be contacted via alternatives@alternatives.karoo.co.uk   nblakemecfs@hotmail.com  http://nancyblakealternatives.com/ Her books are available to purchase at www.amazon.co.uk/Nancy-Blake-BA-CQSW/e/B0089NS0RK/ref=ntt_dp_epwbk_0

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