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Why does the ME Community have to endure CG53 ?


Greg Crowhurst

It is a great concern to see a leading Consultant being quoted in the Sunday Times apparently stating that:

Doctors are failing to diagnose ME, through neglect, ignorance or cold feet because it is controversial. There are perfectly good Nice[National Institute for Health and Care Excellence] guidelines telling every GP how to diagnose it.

It is important, though, to view the Consultant's comments in context.

The Sunday Times article was an exposure of the terrifying situation where families, who have a child with ME are placed under investigation by Child Protection Officers who “disagree” with their diagnosis.

In that situation, the deeply flawed NICE guidelines (CG53), are probably better than nothing, nonetheless, condemned by virtually every ME organisation in the UK, they are widely considered to be not fit for purpose, for example :

  • NICE failed to include experts from all the relevant professional groups on the Guideline Development Group ( GDG)
  • Patients' / carers' views were not given equal weighting and status, as subsequently confirmed by two members of the GDG.
  • By limiting their consideration of the literature to that which supports the psychiatric paradigm of ME, NICE exhibited intrinsic psychiatric bias and failure to take account of the available published biomedical evidence about ME, without knowledge of which the Guideline fails to provide an aid to diagnosis (as was its remit).
  • The sole management recommendations are based on weak and inconclusive studies of dubious quality on heterogeneous groups of people, the majority of whom are unlikely to have ME but may have suffered from any one of over 30 other disorders where "fatigue" is a symptom.
  • The Guideline's conclusions did not coincide with the majority professional view of the international medical and scientific communities about ME.
  • NICE confused ME with other conditions and fatigue states and have poorly married together two opposing views : the psychiatric model which says "unhelpful illness beliefs", "thoughts, feelings, behaviours" and "over-vigilance to symptoms" perpetuate the illness and the biomedical model, which validates the physical illness. This has led to a flawed document that meets no-one's real need, with a predominance of psychiatric interpretation.
  • NICE recommended that laboratory tests, which in other countries have helped to establish the organic nature of ME/CFS and which point to potential therapeutic interventions, should be specifically forbidden in the UK.
  • NICE disregarded the fact that patients are almost universally opposed to CBT and to GET, because survey after survey has shown that GET can be harmful to people with ME.
  • NICE has produced Guidelines for 19 different clinical conditions. Only in the case of the organic disorder ME is CBT recommended as the primary treatment of choice.

In addition, as Margaret Williams (2007) has extensively documented, NICE appears to be in breach of the AGREE guidelines, a rigorous methodological process it is expected to follow in drafting clinical guidelines.

Recently I was involved with Michael Evison in drafting a question, to ask NICE at a public Question Time: “unfortunately” , through an “administrative error” the question did not get asked live. However, in their reply NICE acknowledged the misgivings people with ME, especially Severe ME have about the Guideline.

Here is the question, followed by relevant extracts from NICE's reply:

"I'd like to ask how NICE can justify the current guidelines for ME, when, in breach of the AGREE Instrument (The Appraisal of Guidelines for Research and Evaluation) to which it is obliged to conform. NICE ignored the literature, over 4000 published papers on biomedical aetiology, excluded from consideration research, for example on cardiac anomalies, that directly impinges on the safety of its recommendations for Graded Exercise and according to a patient rep, who resigned from the CDG, did not fully taken into account patient evidence ?"

In their reply NICE acknowledged that the guidelines do not address the needs of the severely affected :

"We are aware of the strength of feeling from people with CFS/ME and people who care for them that our guidance doesn’t address the needs of the most severely ill. We are also aware of the ongoing concerns of patients and CFS/ME groups regarding the level of research into these conditions, the lack of services and treatments, and the support available for patients, on which we have received numerous comments since publication of the guideline in 2007. "

Yet still they have placed their flawed guidance on the static list for a further 5-10 years.

"In terms of updating our guideline, we considered whether the guideline warranted an update in 2010/11 but found no substantive evidence to suggest that a significant change in clinical practice was needed. We have since reviewed this decision again with stakeholders (late 2013) and consulted on our plans to move the guideline to the static list. Clinical guidelines placed on the static list will be reviewed every 5 years to determine if they should remain on the static list, and consideration will be given to transferring the guideline back to the active surveillance list if the high level review at 5 years yields new evidence which may impact on the guidance. We understand most of the current research is biomedical and not expected to impact on the current guidance for 5 – 10 years.

The NICE Guidelines fail to identify or address the medical needs of the most severely affected, this, alongside their many other failings, makes them far from "perfectly good"; this raises the question, why does the ME Community has to endure this injustice, with no hope of a change in focus, for up to another decade ?

References :

Margaret Williams (2007) Comments on the NICE Guideline on “CFS/ME”:

With Hindsight : Things I would say to myself when I first got ill.

1. You are very seriously physically ill.
2. Do not easily trust anyone. Trust needs to be earned and genuine knowledge and respect demonstrated. 
3. Do not push yourself too hard or ignore your symptoms, thinking they will go away.
4. Neither give up everything completely unless it is necessary, because once given up it is unlikely to easily return.
5. Make sure that the prejudice, ignorance, laziness or incompetence of others do not stop you from getting thoroughly investigated medically. 
6. Make sure that your symptoms are thoroughly investigated, incase you have something rare and treatable or not so rare and overlooked. If possible and reliable, get tested for other rare diseases, Hypothyroidism, Adrenal insufficiency, Pituitary damage, Lyme disease, mitochondrial disease, Periodic Paralysis, Anaemia, allergies, B12 deficiency, Vitamin D deficiency, any others relevant to your symptoms. They are not ME.
7. Do your own research to understand what might be causing the symptoms.
8. Make sure you get all the medical test results yourself and go through them to check they have been properly interpreted.
9. Trust your body. It knows what it needs.
10. Rest if you can, but move when you can too, so you do not deteriorate further. Learn what works for you. Rest may just be trying to avoid over - stimulation.
11. Take away as much stress from your life as possible, it uses up energy and can cause you to deteriorate. Stress can be emotional, mental or physical, can be internal or external environmental stress upon you. The illness itself is a stress on your body. 
12. Change the way you live, in order to protect yourself from more harm. 
13. Do not see people to please them if you are too ill to see them.
14. Be aware that anything you do has a post- exertional response, causing increase in pain and other symptoms and take this into account.
15. You can be harmed by well meaning but ignorant practitioners, doctors, treatments, medicine. Make sure people listen to you and understand your experience.
16. Make sure you take care when trying new medicine and introduce it slowly to check for negative reactions. Normal doses may well be too much for you, at least initially.
17. Pay for private reliable tests if you can afford them, but make sure they are safe and reliable, knowledgeable practitioners and relevant to your illness.
18. Do your best to make sure you are properly tested and the tests done properly so that you can rely on the results you are given.
19. Taking supplements for deficiencies will help you, but it may be slow and you may not always feel the benefit for a long time or only gradually.
20. This is an illness that has taken over every system and part of your body, including your brain. You will not get an accurate picture sadly from the National Health Service. It may never leave you despite being told you will recover for no reason, with no appropriate medical input.
21. Avoid the psychiatric pathway. It is based on denial of your physical illness.
22. Be accurate about your descriptions of how ill you are. Make sure your whole illness is  represented accurately, not misunderstood because it may be invisible from the outside.
23. Never give your power away to other people. You know how ill you are more than anyone and you need to figure out how to cope moment by moment in the best way for you. No one can know that better than you.
24. You can get unbearably worse. No matter how ill and severe your symptoms are, they can increase indescribably, therefore be very careful to protect yourself as best you can.
25. The environment is a danger to you and you need to take as many protective measurements as possible to avoid harm and unbearable exacerbation of symptoms. 
26. The name of your illness is important. Make sure that the correct illness interpretation is attached to whatever label you are given. ME is a neurological disease. CFS is  an umbrella term. Many people use different criteria to supposedly identify your illness. They are not all reliable, safe or accurate. Know who you are dealing with and what they mean, when they use the term ME.
27. You need biomedical interpretation, respect and treatment, not psychosocial misinterpretation.
28. ME is not fatigue; you have many serious symptoms that are nothing to do with fatigue. Be very clear on this.
29. With ME there are many losses, many hoped for things are lost and left behind.
30. You have to live in a new way. There is no quick fix.
31. Stay hopeful, but realistic.
32. You are going to have to become your own expert.
33. Detoxing can make you more ill. Approach with caution and awareness.
34. People will not understand and friends will desert you over time.
35. This disease goes on for decades. You have to adjust to this.
36. Developing inner strength, awareness and focussing on love will help you survive.
37. You have to find a coping mechanism for the extreme symptom experience, moment by moment
38. Never let despair win.
39. When you need care it needs to be done in the right way. This is not easy to learn and the level of sensitivity and flexibility required is immense.
40. If people are to engage with you, it has to be on your terms. This makes external demands and expectations very difficult to deal with. You have to make sure that you are not harmed.
41. You need to stand up for yourself at the end of the day, however hard that is.
42. You need to try and make sure that you do not get misinformation and psychiatric misinterpretation of your illness on your medical records, by ensuring the people you see are safe and genuinely understand ME.
43. Getting a good GP is paramount, one who understands you have physical illness and is willing to work with you.
44. Identify your symptoms and understand how they interact and affect you. Learn what might alleviate or ease them, temporarily, if at all.  
45. Find a safe, reliable, respectful biomedical practitioner who can interpret your illness experience and make safe, relevant recommendations. There are very few in reality. Do the research yourself or with help you can trust, before you get harmed or wrongly treated or misinterpreted.
46. You are going to have to be patient and flexible in every moment. Nothing is going to be simple, straight forward and definite.
47. You will suffer and struggle and not be understood. You are at risk of harm and serious deterioration, misinterpretation, misunderstanding and abuse, even by well meaning people. 
48. You need to learn to be resilient in your heart.
49. Your life is precious and you deserve better than you will get.

Linda Crowhurst

Scalded and withered

I am scalded
and withered
By noise
Like hot coffee
Thrown carelessly
On hopeful grass.
My life is dumped on
And destroyed in an instant
Of crass ignorance
And abusive noise assault.
My life
And all possibility
Is crushed,
In a torment
Beyond description.
Noise breaks me up into pieces.
It invades my every cell.
It twists and screams and writhes around my nerve pathways
Leaving them high pitched and demented
Screeching down the nerve cells like a banshee
Shaking me apart from within
My muscles expand, contract, collapse,
unable to sustain holding me together.
Pain explodes, stabs, jerks, burns me inside and out.
My mind is confused in a cacophony of autonomic chaos.
My limbs, my face, my eyeballs, even my eyebrows, are totally paralysed.
Noise, simple, rumbling, grumbling, tinkling, screeching, thundering, slamming, banging, crashing, noise
Is my jailer,
My torturer,
My controller,
My destructor.
And despite my best efforts
There seems to be nothing I can do
To stop the bombardment and destruction

That goes right to the heart of ME.

The Nothingness of Nowhere part 2

Yesterday I posted a quote from my book, Severe ME, featuring Justice for Karina Hansen, about the need, from a carer's perspective, to be brave, bold, open, true, strong, alive.

The words take on a whole new meaning when viewed from the person with Severe ME. 

BE BRAVE: you have to be brave every day just to survive the onslaught and agony of unrelenting and complex symptoms.  

BE BOLD: you keep having to stand up for yourself, speak up, boldly trying to get your needs understood and met, whether by yourself or even with an advocate, you still have to be bold enough to demand better. 

BE OPEN: you need to be open to the possibility of healing and hope, even despite the torment of unending illness that never leaves you and finds a hundred different ways to torment you daily and the sometimes seemingly hopeless situation you find yourself in.

BE TRUE: you have to be true to the truth of your very physical, overwhelming, unrelenting, all consuming illness, because you know how ill you are and no one can deny it, even though they might try, yet no one can cover it up forever if you speak the truth about it and never compromise it away. 

BE STRONG: absolutely you have to be strong to get through each moment of never- ending tormenting serious and severe symptoms, you have to be strong when people ignore you or let you down or negate you or dismiss your reality, when they let you down, misinterpret, misrepresent, mislabel your illness, you have to keep strong, to keep bearing it day in day out, year in, year out, decade in decade out. 

BE ALIVE: this is the most important of all because this is your life and you are precious and unique in the world and your presence matters, no matter how hidden away, desperately ill, severely disabled, isolated and alone you feel, your life is valuable, you are valuable.

The Nothingness of Nowhere

The nothingness of nowhere. The ancient author of the Cloud of Unknowing describes how you can be blinded by the light in such a place.

You can also be bored, bored beyond any comprehension of the word by the terrible emptiness.

The nothingness of Very Severe ME is almost total. There is nowhere the person can go, there is nothing they can do to escape the ravaging hypersensitivity that has destroyed their life, their gut-tearing suffering, there is no comfort for them anywhere, no relief, no distraction. They have to be in it.

It is inevitable that the carer will experience a hint of this place, as they try to sustain the person.

The great danger, in any moment, is despair. Great courage and bravery are required to hold you both, carry you through.

Just say "No MORE"!!

You SHOULD NOT have to  :

 endure condescension and dismissal by neurologists , doctors, nurses , social workers, not interested in your neurological symptoms.

 endure inappropriate psychiatric therapeutic techniques, for your serious physical disease, that are almost certain to harm you .

 endure the  promotion of a biopsychosocial approach to your disease, when it is not a mental health illness.

 endure a complete lack of biomedical ME clinics and biomedical ME clinicians.

 endure major ME Charity's actively collaborating with the psychiatric lobby .

 endure lobbyists  who have vested interests being allowed to be influence your illness.

 endure psychiatrists being allowed to promote a vague symptom of fatigue that is not the primary dysfunction in ME.

 endure the inappropriate name- change of  your disease from ME to CFS.

endure inconsistent, inaccurate criteria being used to poorly identify those who have ME.

 endure the neurological nature of your illness being dismissed .

endure the vast array of unending ME symptoms with no adequate investigation, treatment or cure .

endure fatigue, CFS research being misrepresented as ME research.

 endure living in fear that you will not get your benefits.

endure having to accept you will get wrong treatment or poor treatment or no treatment for your ME .

endure knowing that you are seriously, physically ill but there is no appropriate treatment for you.

 endure knowing that you are not going to be offered the biomedical tests that could be done.

 endure knowing that you are not likely to get the right help and support that you need.

 endure knowing that as your neurological symptoms worsen that there will be no neurologists who are willing or interested to help you.

 endure knowing that going to hospital for tests is most likely a waste of time and energy and will lead to disappointment and harm .

endure no medical service for the most severely ill.

 endure knowing that the  doctors and nurses who may have to treat you one day , will not understand how very ill you are .

It is time to SAY : NO MORE !!

When there are no words

Linda's suffering is way, way beyond my comprehension. I hold her, but that is not possible most of the time.

When there are no words, no physical comfort possible, only being very still and loving is all you can do; when contact is agony any slight movement likely to cause pain and any noise a torture, stillness and love alone are all you have.

However even that is difficult - and risky.