b Where can desperate ME patients turn for help? | Voices from the Shadows Voices from the Shadows

Where can desperate ME patients turn for help?

When ME patients fall foul of the NICE & NHS confusion about the classification of their illness, who can they turn to for help? Who will advocate for those in dire need – when they are  told that their ME is a functional or a psychiatric illness and they are threatened or forced into treatments that harm them, or they are accused of being malingerers?

When your future health and even your life, is at risk because of the severe deterioration and post exertional amplification of symptoms – caused by mis-management and treatments involving aerobic exercise and overactivity, a harmful environment where you are overexposed to stimuli, or if your feeding and support is withdrawn – who can you turn to for help in the UK?

I didn’t realise until quite recently just how bad, how terrifying this can be, and just how little help there is for patients with severe ME – especially if someone is on their own and depending on social services for care.

As far as I can see, The 25% Group is the only adult charity in the UK with an advocate who could help in such circumstances. She is very good at her job, but desperately overworked and underfunded. She cannot take on all cases that need help, and members must be prioritised.   For children the TYMES Trust offers help to their members, as you can see from their reports of the horrifying number of families who have needed their help to stop their children being removed.

Why have we, as patients, carers and parents, not insisted to ME charities that adequate support for those patients whose lives are being put at risk is an urgent priority?

Yes, we need research to be funded – but high quality, well designed research looking at key biomedical issues. Too much research is actually a waste of money as far as patients are concerned – it is too small scale, too badly designed, sometimes totally irrelevant or even dangerous and too often includes patients who are misdiagnosed with ME/CFS and actually have other conditions. The big International players are now doing some of the research that needs doing, although in pitifully small amounts, and some smaller scale research projects are carefully directed and well thought out, but patients’ money is still going into random, badly designed, small scale projects whose aim is primarily to help promote particular researchers careers and job security, by bringing in funding for the researcher’s university, and to satisfy patient requests for research.

Surely it is time to make sure that some funding goes to help patients whose lives are being ruined. The sums needed to do this are minute in comparison with the costs of research. For example a research project by Clare McDermott to enable ME patients to share their experiences online, recently presented to to Forward ME and asking for support, has an estimated cost of £350,000!!

Research into the pathophysiology of ME and treatment options needs to be addressed as a priority, but in the meantime we can’t just abandon the unfortunate patients whose lives are being destroyed by medical ignorance, prejudice and psychiatric power struggles – while we support poor quality research, some of which is so distorted it can do more harm than good.

So, my personal suggestion is – join The 25% Group for the Severely Ill if you are mainly housebound, or join TYMES Trust if you have a child. It appears to be the severely ill who are most at risk. Very severely ill patient often develop problems with eating and absorbing food. This is being widely promoted as a psychological issue rather than a common aspect of very severe ME  (evidenced in Voice from the Shadows). You can help other severely ill patients by making a donation to the 25% Group, or fundraising for their advocacy service. Many charities depend entirely on donations and fundraising by patients and their families – make sure that your money is used in the way you want! Some charities have paid fundraisers to raise money and use it in the way their trustees want – but even then you may perhaps have an influence. Please make you voice heard.

None of us want to see children taken from their parents by social services, parents and patients put in psychiatric wards,  patients deprived of feeding to force them into hospital where their ME may be classified as being a ‘functional condition’ or somatoform disorder, or patients subjected to harmful management, or just abandoned. In these kinds of cases expert help is needed urgently, to try to prevent such things happening – and an effective and experienced ME advocate would be the best help to have available to help sort out the priorities of what to do next.

Who is going to put that safety net in place for all those who are vulnerable to bullying and abuse by professionals?

These are some of the issues that need to be urgently addressed in such cases – 

  1. When should you try to contact your MP to ask for help, how do you contact them and how do you educate them about ME?
  2. And your local Councillors? Could they be of help? and which ones? Should you try and contact those with most influence? and again, can anyone help you educate them too?
  3. Should you try to change your GP? Have you already tried everything you can to help your GP understand about severe ME.
  4. Is there misleading or inaccurate information in  your medical records which has lead to this situation? How do you access these and get incorrect or misleading material changed?
  5. How do you find a good solicitor? Do you need legal aid? Are you eligible for legal aid? How do you find out? Are there any solicitors who already have experience of supporting patients with ME. And what should they specialise in – mental health? – social care? You’ll probably need to educate them about ME too!
  6. Are there any doctors or consultants who can ensure you have an accurate diagnosis ? Many people are not accurately diagnosed. Are you well enough to get to see a consultant or do you have to find someone who is willing to visit you? Are there any specialists who would be willing to make a home visit?
  7. Is your diagnosis of ME reliable, but your ME is considered to be a form of psychiatric illness i.e. perhaps one of the  somatic symptom disorders (a new very broad-ranging category which includes what was previously named somatoform disorders) somatisation disorder, psychosomatic illness, MUPS or MUS (physically unexplained physical symptoms),  malingering,  factitious disorder (Munchausen’s Syndrome), or conversion disorder,  or is your ME being considered to be a functional neurological disorder? There are many possible mental health misdiagnoses that people ill with ME might be given. (A recent article in the Independent  has an interview with the President of the Royal College of Psychiatrists who gives CFS (ME) as an example of the stigma attached to mental illness! So CFS or ME  is very publicly categorised by a top psychiatrist as being a mental health illness.) The main medical text book by Kumar and Clark doesn’t mention ME, but includes CFS in the mental health section under Functional or Psychosomatic Disorders, so having your CFS/ME treated as a mental health condition is a very real risk, especially for those who are severely ill and who develop problems with eating and digesting food.
  8. How do you deal with Social Services and help them to understand the illness? Do you also need to re-educate any Care Company involved?
  9. Will showing the ‘Voices from the Shadows’ film to the professionals involved help? – It has often helped people understand more about severe ME.
  10. What other information should you give to people to help them understand your illness? How can you access it? Would the ME Association Purple Booklet be useful? or other material accessed via this website here. What would be most useful?
  11. Are there other advocates who could help? (especially if you have other diagnoses too – there may be other charities  – i.e. -for Hyperflexibility  – EDS –  POTS or Crohns, if you have these co-morbidities, who might help)
  12. If there are no charity advocates who can help you then should you contact an independent advocacy service? – to ask for someone to write letters on your behalf if  you can’t do it yourself.
  13. If you can’t do all these things yourself, or your carer can’t do it for you and you have absolutely no one to turn to, which charities might help you as a last resort?  Who can you trust to try to keep you safe – without risking ending up in an even worse situation – because that too is possible!


The current NICE and NHS confusion about the classification of  ME and CFS.

Prof Baker from NICE agreed, at a Forward ME meeting in June 2014, that the NICE Guideline for CFS/ME needs replacing – but that he can’t do anything about that!

Next, following a request from Jane Colby, pointing out that the NICE Guideline for CFS/ME couldn’t be listed under two different classifications, it was removed from the mental health listing – at long last! However, not only was it removed from the Mental Health listing, but it was also removed from Neurological conditions!!!! One step forward and another step backwards!

Earlier this year Prof Hooper wrote; “the WHO publicly confirmed that: “Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11” and that this has been accepted by the UK Parliamentary Under-Secretary of State for Health (Jane Ellison MP) who, on 25th February 2014 stated on the record: “The World Health Organisation is currently developing the 11th version of the International Classification of Diseases, which it aims to publish in 2017. No discussions have taken place between the Department and the WHO on the reclassification of ME/CFS, but the WHO has publicly stated that there is no proposal to reclassify ME/CFS in ICD-11”.

The Countess has followed this up with further questions on Nov 26th and 28th.http://www.meassociation.org.uk/news-too/ She tabled a question asking the Government “which organisations within the National Health Service or which represent members who provide services to the National Health Service are bound by the World Health Organisation’s International Classification of Diseases?” The answer from Lord Howe, “The United Kingdom as a member state of the World Health Organization (WHO) is expected to comply with the WHO Nomenclature Regulations 1967 and is required to use the most current version of the International Classification of Diseases (ICD-10) for reporting cause of death and disease for compiling and publishing mortality and morbidity statistics. As such all providers of National Health Service funded care are required to submit ICD-10 codes for national reporting.”

Postviral fatigue syndrome and benign myalgic encephalomyelitis  are classified by the World Health Organisation ICD-10 G93.3 under ‘other disorders of the nervous system’ and then ‘other disorders of brain.’

A completely different illness – ‘fatigue syndrome’ – is included under ‘other neurotic disorders’ and ‘neurasthenia’ at  F48.0. This listing specifically excludes post viral fatigue syndrome (G93.3). Another diagnosis which is sometimes being mis-attributed to patients suffering from ME is ‘persistent somatoform pain disorder ‘ F54.4.