The National Institute for Health and Clinical Excellence (NICE) have recently published their draft document for clinical guidelines. The document is being developed for use in the NHS in England and Wales regarding chronic fatigue syndrome / Myalgic Encephalomyelitis (CFS/ME).

IiME Response:

Our response to the NICE Draft Guidelines

Our stakeholder submission (via email and registered post) using the requested NICE format

Summary of Response:

The reaction to the NICE guidelines can be summed up as profound disappointment that NICE have chosen to highlight, yet again, Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET) as the most effective forms of management (aka treatment) for ME.

  • Psychiatric paradigms are referred to and recommended as therapies and as treatments for ME despite ME patients and groups stating they are ineffective or harmful.

  • Graded Exercise Treatment (GET), already known to be potentially harmful to people with ME, is put forward as a therapy/treatment

  • GET is put forward, along with Cognitive Behaviour Therapy (CBT), as treatments of first choice

  • The NICE group formulating these guidelines show a disingenuous side by comparing the use of these treatments for ME with the use of these treatments for cancer and diabetes and other illnesses. Yet CBT is not offered as first line treatments for these illnesses which NICE are recommending here for CFS/ME.

  • It is not for sensation that IiME would like to see a lawyer added to the NICE consultation group. The lawyer would be there to represent ME patients as one can foresee that there will be litigation against the people making recommendations for use of GET/CBT when a patient suffers, or dies, from putting into practice such guidelines.

  • IiME believe these Draft Guidelines should state unequivocally that it is unacceptable for patients with ME to be subjected to “sectioning” by psychiatrists, supported by Social Services and the Police, simply because the person has ME.

  • We dispute the frequent statements characterised by this text ‘There is little understanding of the nature of the disease ‘. There are over 4000 biomedical research papers on the illness which the NICE searches should have seen and analysed.

  • The NICE guidelines do not carry a single reference to the relationship between vaccinations or epidemics.

  • The document is inconsistent in a number of areas - especially terminology

  • The inclusion of as wide a possible base of chronic fatigue states in the draft guidelines is clearly evidenced and does a disservice to pwme

  • Essential biomedical research which distinctly shows the biological nature of ME is ignored

  • The lack of proper discussion of the Canadian guidelines shows not only a bias to outdated and flawed information but invalidates much of the data used to justify the proposals

  • The layout and format of the document is poor

  • The objectives of the Nice Draft Guidelines are not met

  • The credibility of NICE is now severely compromised

Yet again ME patients seem to be on the receiving end of another counter-productive and biased analysis. The document shows little new thinking and is clearly lacking in impartial analysis of all areas of research into ME.

Although not an original stakeholder (IiME only became a charity in May 2006) we have nevertheless registered to become a stakeholder in these guidelines and have supplied our response directly to NICE.

In the meantime remember our document on CBT (click here) as well as other articles on the PACE and FINE trials which have been set up by the Medical Research Council, and which also endorse psychological therapies.

Last Update 8th November 2006