UK Government responds to a petition calling for an effective policy regarding the treatment of ME

Pike

Active Member
The Government has responded to the petition you signed – “Debate in Parliament the absence of an effective policy for the treatment of M.E”.

Government responded:

The Government accepts the World Health Organisation’s classification of CFS/ME as a neurological condition of unknown origin.

Many potential causes for CFS/ME – including neurological, endocrine, immunological, genetic, psychiatric and infectious – have been investigated, but the variety of symptoms and the range of their severity cannot be fully explained. As the symptoms of CFS/ME resemble those of other forms of debilitating illness and there is no test with which to make an accurate diagnosis, it is not always easy to diagnose single cases of the condition. Diagnosis relies on clinical observation of symptoms by healthcare professionals.

For those affected, it is important that they receive the right diagnosis and that the treatment and support they receive are tailored to their symptoms, needs and circumstances. NHS clinical commissioning groups are responsible for ensuring that local people affected by CFS/ME are able to access appropriate care. To support local services in the diagnosis, treatment and support of patients with CFS/ME, in 2007 the National Institute for Health and Care Excellence (NICE) published a clinical guideline on the management of CFS/ME in adults and children, which sets out best practice on the care, treatment and support of patients with CFS/ME. NICE is the independent expert body responsible for developing robust, evidence based guidance for the NHS to design services that are in line with the best available evidence.

The NICE guideline on CFS/ME recommends treatments, such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET) approaches, that have the clearest research evidence of benefit. However, it does not detract from the right of patients to be involved in decisions about their treatment. The guideline recognises there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want. Instead, it emphasises a collaborative relationship between clinician and patient, that treatment and care should take into account personal needs and preferences, and that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme. It is also important to clarify that the effectiveness of CBT as a treatment for CFS/ME does not make assumptions about the nature of the illness. CBT is used to help and support people through physical illnesses and is used widely to manage many medical conditions such as arthritis, heart disease and chronic pain.

NICE last reviewed the guidance with its stakeholders, including CFS/ME charities, in 2013. The review found no update was required and at that time no major ongoing studies or research were identified as due to be published in the next three to five years. The full guideline may be viewed on the NICE website at the following link: www.nice.org.uk/guidance/cg53

Recently, NICE has been made aware of three US reports that have indicated there are likely to be changes in diagnostic criteria that could have an impact on the CFS/ME guideline recommendations and decided to start a check of whether the guideline needs updating. NICE has also been made aware of new information about the 2011 PACE trial, which highlighted CBT and GET as safe and effective treatment options for people who have mild or moderate forms of CFS/ME. At the time, NICE concluded that the results of the trial supported its existing guidance, but it will now also consider that new information as part of its check of the guidance. NICE plans to set out its decision regarding an update shortly. More information can be found at the following link:www.nice.org.uk/guidance/cg53
Department of Health

This response makes me so angry. My life is flashing by and I am so ill. As a community we've had 30 years of institutional discrimination and neglect from the British medical establishment.I can't wait another 20-30 years for change. I want change now!

The political and medical establishment are basically saying that we just have to shut up and accept our illness as nothing is going to done by those in power to help us. I have undergone CBT with various NHS health professionals and I have got worse and worse until I recently lost my job. As a community we must engage with our and educate our MPs and insist that they take action on our behalf. Please support David Tuller and others in their ongoing attempts to take down the 2011 PACE trial.
 

Vaporization

Active Member
This response makes me so angry. My life is flashing by and I am so ill
Everyones life is flashing by, the difference is you aren't enjoying yours. And for good reason.

The political and medical establishment are basically saying that we just have to shut up and accept our illness as nothing is going to done by those in power to help us.
That's essentially it, and the change that is happening now is one of the most inspirational things I've seen in my life. People everywhere, are insisting that this is something we can solve, and we will, like it or not.

Please support David Tuller and others in their ongoing attempts to take down the 2011 PACE trial.
Absolutely, and don't lose faith in humanity, few people are stupid enough to be fooled by such nonsense forever. ;)
 

Pike

Active Member
Thank you for your supportive comments.

Yesterday Jim Shannon an MP from the DUP (an extremist group from N.Ireland that has links to protestant paramilitaries) asked the British Minister for Health the following question:
To ask the Secretary of State for Health, what steps his Department is taking to encourage people with chronic fatigue syndrome to exercise each day.
Below is the reply from Steve Brine MP Under Secretary of State for Health:
In 2007 the National Institute for Health and Care Excellence (NICE) produced the best practice clinical guideline, Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children. The guideline, last reviewed in 2013, sets out best practice on the diagnosis, treatment care and support of children and adults with CFS/ME and supports local National Health Service commissioners and clinicians in the delivery of services.
The NICE guideline makes recommendations on the use of Graded Exercise Therapy (GET) in patients mildly or moderately affected by CFS/ME. GET is a structured exercise programme designed to gradually increase how long someone can carry out a physical activity. It should be tailored to a person's current level of activities and should be delivered only by a suitably trained GET therapist with experience in CFS/ME under appropriate clinical supervision. The guideline also acknowledges that there is no one form of treatment to suit every patient and that treatment and care should take into account the personal needs and preferences of the patient. The guideline can be found at the following link:
www.nice.org.uk/guidance/cg53/resources/chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-pdf-975505810885
To ensure its recommendations reflect the latest available evidence, NICE is currently reviewing its guidance to see if an update is required. A decision is expected shortly.

I have tried all of the approved NICE therapies and they have made my illness so much worse. My local ME support group carried out a survey with our local NHS Healthwatch the results showed the following:
CBT 12% said it helped them better manage their illness - 18% said it made their illness less maneagable
Graded Exercise Therapy 6% said it helped - 40% said it made their illness less maneagable.

I would urge all ME support groups/medical charities to get involved in this coming consultation by NICE.
As former Labour MP Dr.Ian Gibson says in his recent book,'Science, Politics and ME':
Now is the time to encourage patient groups to take up the challenges. It's time to question those who run our health services and, if necessary, replace them with people who know what they are talking about.'

Every 2 months NICE holds public Question Time events where members of the public can go along and put senior members of NICE on the spot. Members of the ME community need to start attending these types of events.

I have managed to steer my local ME support group to start the process of engaging with our local Clinical Commissioning Group about the health inequalities facing people with ME. From there we will move on to lobbying local councils. Any progress is a win as they are no services for ME patients in my area.
Keep Fighting!
 

Hustler

Active Member
Just take viread and raltegravir
Simple

Don't expect the government to help you.
Even if they want to help, they cant.
Pharma are just too big so the people have got to get on ARVs until it becomes normal and then it will be accepted
 
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garnet10

Active Member
Just take viread and raltegravir
Simple

Don't expect the government to help you.
Even if they want to help, they cant.
Pharma are just too big so the people have got to get on ARVs until it becomes normal and then it will be accepted
Hustler, the thing that doesn't make sense to me is that one would think pharmaceutical companies would jump at the chance to have so many patients taking their anti-retrovirals.

I don't understand why this has not happened.
 

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