Somebody help “ME”!

By Pam Field and Sue Davies

 Supporting children with ME/CFS

There are many teenagers and child sufferers with this condition, many of whom seldom leave their homes.  It is one of the most common reasons for long-term absence from school together with EBSR (Emotionally Based School Refusal). There is inevitably some overlap between these two, since long-term absence from school may induce anxiety, but causes are very different.

Introduction

What is ME, and how does it affect children? It is extreme debilitating fatigue, often pain and cognitive dysfunction, which affects many children and adults and is referred to by a number of terms:

  • Myalgic Encephalomyelitis or Encephalopathy (ME)
  • Post Viral Fatigue Syndrome (PVFS)
  • Chronic Fatigue Syndrome (CFS)
  • Chronic Fatigue – Immune Dysfunction Syndrome (CFIDS)

Awareness of this condition varies considerably, with many still doubting the physical nature of the illness because of newspaper headlines of ‘Yuppie Flu’. Indeed the attitude towards adult sufferers considered shirkers is commonplace, and this is unfairly reinforced by headlines in the press, who seek to support the callous policies of the Coalition government on welfare reform. Being doubted makes the whole experience doubly difficult for a child. There is no doubt that families feel unsupported and abandoned and often bewildered by the sudden onset of this condition and confused by conflicting advice.  Causes of chronic fatigue syndrome vary. It can sometimes be triggered by a viral infection (like a cold or stomach flu), or a bout with the Epstein-Barr virus or mononucleosis (often referred to as glandular fever). Some people contract chronic fatigue syndrome after a great emotional upset, such as loss of a loved one, or major surgery because depression or emotional stress can compromise our immune system and make us more vulnerable to viral attack. However, where most people recover from a viral infection, ME/CFS sufferers remain extremely fatigued.

There has been some research into potential genetic causes.

“Genomic analysis revealed some common (neurological, cancer, immunological, inflammatory, haematological) and some distinct (metabolic, endocrine, dermatological, cardiovascular, connective tissue) disease associations among the subtypes. Subtypes 1, 2 and 7 were the most severe, and subtype 3 was the mildest. Clinical features of each subtype were as follows:

subtype 1 (cognitive, musculoskeletal, sleep, anxiety/depression);

subtype 2 (musculoskeletal, pain, anxiety/depression);

subtype 3 (mild);

subtype 4 (cognitive);

subtype 5 (musculoskeletal, gastrointestinal);

subtype 6 (post-exertional);

subtype 7 (pain, infectious, musculoskeletal, sleep, neurological, gastrointestinal, neurocognitive, anxiety/depression).

It is particularly interesting that in these there were distinct clinical syndromes and that those which were most severe were also those with anxiety/depression, as would be expected in a disease with a biological basis.”

Reference to this research can be found here

These two  articles are major works by (Kerr, J., Burke, B., Petty, R., Gough, J., Fear, D., David, M., Axford, J., Dalgleish, A and Nutt D. )

CFS-gene-1c refers to the seven subsets (2008) , and  JCV-CFS  a review of CFS (2006)

Children who are too sick to attend school are, by law, entitled to an education. The amount of educational input a young sufferer is able to access may be very little, but an experienced practitioner will recognize those limitations ensuring the student learns effectively without further detriment to health. The provision provided by education authorities and schools around the countries varies tremendously. Families can be put under pressure to move from one geographical area to another in order to obtain support for their children. This postcode lottery cannot continue and is grossly unfair.

Example of a typical viewpoint of a teacher in school

“We never see her.  We sent work home, but it’s never finished.  I don’t think she can do any GCSEs because all of our students started in Year 9 to do their GCSEs, and it’s too late now.  We can’t do part-time because it doesn’t fit in with our timetabling.”

Typical experience of a home tutor supporting a child

“School have been really helpful and sent work home.  It’s difficult for him to focus on this work on his own. I find he is only able to work for 20 minutes or so.

We try and concentrate on the important points, but he find in some subjects really tiring, and I can tell he’s had too much.  I try to keep lessons stress-free.  He really struggles with coursework deadlines, and homework.

Pacing is important, and we work closely with the hospital, and the ME/CFS team.”

Support to aid re-inclusion back into school, which we find helpful:

  • Part-time timetable, maybe trying late morning
  • Transport to and from school
  • Excuse from P.E. or games
  • Flexibility of timetables
  • Information to all staff about pupil’s needs
  • Provision of rest areas
  • Exam concessions, sitting exams at home if necessary
  • Flexibility of deadlines
  • Try to keep in contact with tutor groups
  • Avoid classes with stairs
  • Consider lunchtimes, go home, increase gradually, social contact, avoid queueing

Ideas from specialist teams

The paediatric  research team based at Bristol University has run projects looking at:

  • The Epidemiology of ME in children
  • Prognosis and outcome of children with ME
  • Impact of ME on families
  • The prevalence of undiagnosed ME in children
  • Predictors of fatigue and ME
  • Study of Parents and Children (ALSPAC) as well as other projects

Dr Esther Crawley has published evidence that ME/CFS exists in children under 12; that children with ME/CFS don’t go to school because they are unwell not anxious and that young people with ME/CFS have significant problems with memory and concentration.  Awareness varies greatly around the country and within the NHS.  Investment  for research in this area is crucial to ensure country-wide quality effective support. There is controversy among medical practitioners, and it should be borne in mind that every case in different and there is no one cure.

Typical carer of 20 year old:

From “Somebody Help ME” (Jill I. Moss) 

“I’ve tried everything – alternative treatments, diets.  Everyone seems to have heard of some weird remedy or another and you feel you have to try it.  I’d feel I wasn’t trying hard enough otherwise.  The trouble is, that the more treatments we try, the more hopeless it seems.  I’m then left feeling guilty for raising her hopes.”

Parent’s story

I have had to change career and work from home in order to look after her.  The doctors/teachers seem to think that I have some crazy emotional investment in my child being ill.  I daren’t think about a time when she gets better … I’ve had my hopes raised too many times before. Many marriages break up because of the stress.  I feel so helpless and guilty that I can’t make her better.

A young woman’s account

I’m 25 … still living at home … no job, no degree … I go out with friends about once every six weeks and then lie on the settee for the next week, too ill to do anything. I don’t know if I will ever get better … there are so many things that I wanted to do with my life … and it is all just passing me by.

Threats to services

There is concern that the introduction of Academies and cuts to services provided by Local Education Authorities will leave these students without access to quality teaching. Despite the need for support from specialist teams, and despite comments in the press that front-line services are being protected by the policies of the Coalition government, the reality is that much specialist provision is being cut around the country. , In January,  (3) there were protests from Cambridgeshire families and children, and this is just one example.

The Department of Education states:

“LEAs have a duty to provide suitable education for children of compulsory school age who cannot attend school due to illness or injury. This education might be provided in a number of ways, for example in hospital schools, in pupil referral units, at home or through a combination of these. Mainstream schools have a vital part to play in supporting the education of sick children on their roll.”

Why therefore has there been a cut to government funding for LEA services? On 11th July 2011, David Cameron announced in the government’s white paper on public services that they would be opened up to potential private investors to provide for services.  For companies to seek to make profit from the misfortunes of the ill, the disabled and vulnerable is at the very least immoral. This is a typical response of a Tory-Led, but Lib-Dem-Supported Coalition, which puts profiteering and dismantling of public services at the heart of every policy it presents. It is all about stripping of public assets, attempting to destroy the heart of a caring society and replace it with an every-person-for-themselves mentality, where survival of the fittest can be read as survival of the richest.

To those who suffer with ME/CFS  and to their families, Labour must say that “We have not forgotten you” … and we will commit government money into much needed research into this debilitating and often serious condition.

Labour’s policy is that Everyone Matters, and indeed it is surely their responsibility to ensure that children suffering from this condition achieve the very best chance of recovery, have access to education and enjoy the best of life opportunities possible. It is not acceptable to turn a blind eye, and allow these individuals to be forgotten.  Cuts to support services, for vulnerable children across the country, put these and other vulnerable children at risk.  In seeking re-election, Labour must demonstrate that it  is the Party which cares about every citizen,  young and old. Labour should reverse the policies from the current government, which result in marginalization of vulnerable children from society, and neglecting their responsibility to provide free, quality education as they are statutory obliged to do.

Labour’s policy should aim to:

  • Ensure all professionals are well trained and informed
  • Ensure suitable educational provision is in place to suit the needs and health of the child
  • Encourage flexibility of provision
  • Provide free on–line learning and home tutoring or school support as appropriate, with access to library resources
  • Ensure development of specialist teams within the NHS in all areas of the UK who can provide support to children and their families, and to educationalists with in order to aid recovery
  • Schools should liaise closely with the health professionals and home tutors to ensure continuity of education, and they should be prepared to be flexible especially if reintegration back to school is deemed appropriate
Labour’s health and education inclusive policies must ensure that the 250,000 sufferers of CFS/ME children and adults are not forgotten, and that it is communicated through both policy documents and through the media, that for the Labour Party, “Everyone Matters.” 

Documents and references

1, and 2 research into ME, by J Kerr

Kerr, J., Burke, B., Petty, R., Gough, J., Fear, D., David, M., Axford, J., Dalgleish, A and Nutt D. http://www.cfs-research.org/publications.htm 
3. Cuts in Cambridge to EOTAS provision
http://www.cambridgefirst.co.uk/news/angry_families_protest_against_cambridgeshire_school_cuts_1_769380
4.   Jill I. Moss, “Somebody Help ME,” a self-help guide for young sufferers of Myalgic Encephalomyelitis, and their families.
5.  Pacing for Young People with M.E. (Action for ME)
Emily Collingridge, “Severe ME/CFS: A Guide to Living.”
6. Photo credit : Photo by Sarah-Rose (www.ohdarling.net.nz)http://creativecommons.org/licenses/by/2.0/deed.e
7. Department of Educationhttp://www.education.gov.uk/b0065507/gttl/vulnerable-children/sick-children

9 thoughts on “Somebody help “ME”!

  1. I had chronic fatigue, depression, insomnia, loss of appetite and weight loss for years which was diagnosed as bipolar disorder. My local Mental Health Trust carried out a number of blood tests in November 2008, one of which showed that I had B12 deficiency. They did not treat this condition and did not inform me or my GP. Repeated requests for copies of my psychiatric records were ignored and I eventually obtained these 20 months after the original request and following a letter of complaint to the CEO.

    My GP repeated the B12 test which showed that the condition of mild B12 deficiency, which could have been treated with tablets, had progressed to pernicious anaemia and I will now need to have regular B12 injections for life.

    I would urge anyone suffering from CFS to ask their GP to carry out a simple vitamin B12 blood test.

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  2. Psych victim .. Thank you for your warning. My daughter benefited from B12 injections .. a standard vet treatment for sick animals … no human contra-indications but when she went to the new GP, all hell broke out. Her notes now specify no B12 but they would happily dole out heavy duty sleeping tablets, anti depressants etc. There is/has been a complete madness in the medical profession with regard to ME. Hopefully, the research front is looking a little brighter with the MRC calling for research which is not psychological in its underlying assumptions but there is no doubt that there has been 20 years lost because of the Wessely school of psychiatrists.

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  7. I read about an Australian vet who prescribed b12 for glandular fever/ebv sufferers and although I couldn’t persuade my son to have the injections he has tablet supplements inc co q 10 which showed with rest a gradual improvement. The Reverse Therapy book on Amazon was very helpful and broke the cycle of chronic fatigue. He is taking alevels back at school after getting 2 Gcses at hospital school. It has been an incredibly lonely experience as you describe. Adrenal fatigue is the route cause in our case, trial and error with supplements, allergy tests, diet have all helped. Removing him from stress until he recovered enough was key. Extreme muscle pains have not ever been a symptom but we have heard that omega krill with high Dha are supposed to help all of us, as does magnesium. There should be a network support group in each area. A hospital group local to us was closed down and the nurse made redundant just as my son got ill.

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    • Thanks for your feedback. Certainly Vit B12 seems to be important for many sufferers. I’m glad that Reverse Therapy has been helpful in your case but, like the Lightening Process, it does not seem to be a universal panacea.

      Good luck and best wishes for your son’s continuing improvement.

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