Despite having to be forced into introducing a lifetime blood ban for people with ME there seems to be no compulsion to learn, no eagerness to deal with, no urgency to resolve from the CMO's office.  

We leave the reader to decide if we should have expected more.

Attending conferences is not alien to Dame Sally in her new role as CMO (click here and here) and we wonder how much notice of an invitation to speak she would have received for those events (surely not more than the eight months given by IiME every year since 2005).

The conference venue of  Birdcage Walk is about 200 metres from Richmond House. The invitation remains open.

Pre-Conference Evening presentation

As part of our conference this year we are again organising a pre-conference dinner. This year we invite back Hillary Johnson, author of Osler's Web. Hillary presented in our pre-conference presentation of 2009 when she spoke of the CDC and its influence worldwide [available on the 2009 DVD here].

This year Dr. Ian Gibson will be joining Hillary and the theme of the presentations will be Science, Politics....and ME and will look at the reasons for lack of funding and performing of biomedical research into ME.

Dr Gibson is a scientist, politician and academic and is uniquely qualified to present on this topic. He has been a strong advocate of science in the UK and has been assisting IiME in our attempts to get a research and examination facility set up in Norfolk, UK.

IiME have, as with the actual conference day, subsidised the cost of the event to allow it to be within the reach of as many as possible. However, places are limited and this event is already fully booked but we are holding a reserve list and there may be options for attending.

Please see this link for further details.

The Australian symposium organised by the Bond University and The Alison Hunter Memorial Foundation published the abstracts and a communiqué from the event (click here). Researchers had gathered for the two day symposium to exchange ideas and plan for the future and Invest in ME sponsored a virologist from UEA with no previous ME experience to participate. This was in connection with our proposal to set up an examination and research facility in Norwich Research Park.

The symposium involved researchers who perform research relevant to ME in other diseases and experienced ME researchers to encourage dialogue and exchange of ideas.

It is especially welcoming that the participants of the symposium agreed that the correct name to be used for this disease is myalgic encephalomyelitis and the diagnostic guidelines that should be adopted internationally are the Canadian Consensus Guidelines. 

Invest in ME and the European ME Alliance have been promoting this approach for some while.
 

Two years ago we wrote -

And so it happened.

The PACE trials were published and it is apparent that they have served no useful purpose, lacked scientific rigour and are the result of biased research. Also, of course, almost £5 million has now been wasted instead of being used for biomedical research which could have really made a difference to hundreds of thousands of people's lives.

As we commented in December 2009 - "Unfortunately Professor Holgate has found a strange way to get away from "old models" by including known proponents of the psychosocial view of ME to be present on his panel of experts."

The architects of the PACE trials are present in the latest MRC panel. Despite the sham of the PACE Trials this mismatch of different views on the MRC panel continues. 

The MRC recently announced its intention to allocate "up to £1.5 million" for ME research - see http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm#P121_7379.

IiME's response initial response is here and our response to the Lancet (who published the paper) is here.

One of the authors of the PACE trial, Professor Michael Sharpe, has recently moved to Oxford University, Psychological Medicine Research. The research areas of this unit include studies into the nature and management of symptoms unexplained by organic disease, studies of the management of depression in cancer patients and a trial of treatments for chronic fatigue syndrome (the now published PACE trial). The MRC research strategy of looking at symptoms such as pain and fatigue and sleep dysfunction in ME/CFS seem to be tailor made to allow the psychiatrists to continue to dominate MRC policy.

And so our statement about the MRC funding and its priorities seems correct as we can now expect the MRC panel to allow further time to be wasted by looking at these symptoms and allow psychiatrists to continue to control the research debate.

It should be clear now that it was a flawed approach to incorporate in the MRC expert panel those who attempt to portray ME as a behavioural illness. It is impossible to bring together the biological (based on good science) and the psychological faction (based on vested interests and bogus science), without risking the lives of thousands of patients. And we continue to wonder if other organisations and individuals who participate in the MRC panel in search of funding will be forced into performing watered-down research similar to the colossal failures of the PACE and FINE trials.

Why retain this line instead of joining with those who say we must cooperate at any cost, whatever the differences?

Why not remain silent as others do when something as damaging and irrelevant as the PACE trials are published, or who are quick to join the establishment propaganda who maintain that the WPI (and by association the National Cancer Institute and the Cleveland Clinic and the investigators behind Science magazine) can't perform biomedical research without contamination?

IiME have been helping a number of severely ill ME patients over the years and our recent experience continues to show that these patients are truly neglected due to all relevant agencies from social services to GPs, legal advisers, charity workers and family members viewing ME as a mental health problem rather than a physical illness that it is. 

Especially in London the advice given to these agencies seems to be not to give any practical help to patients diagnosed with ME as it might stop them trying to do things for themselves. 

It takes a lot of time and energy trying to resolve years of ignorance, neglect and malpractice which has led to total loss of confidence and trust in the system. 

We can only hope that our efforts are helping to change a few of those minds working for these public agencies so that other patients in the future will get proper help before things spiral out of control.

For example, a house/bed bound patient was offered only a bus pass and food coupons when they asked for help from social services. The patient had not had a hot meal for years and was living off the odd food parcel sent by fellow patients.  Obviously a bus pass is not much use when one can't get out of the house in the first place and family and friends have disappeared.  

Patients are left to live in Dickensian poverty as problems obtaining benefits lead to lack of everything from food to heating to broken cookers, washing machines, boilers, windows etc. 

These severely ill patients living alone are incredibly vulnerable and in need of serious practical and medical help. The help they deserve and should be entitled to can only be achieved by changing the official attitude toward ME patients at all levels. 

It is all very well talking about mind and body at an academic level but in real life if the body is not being fed and taken care of then there surely can't be any progress in one's health, mental or physical. 

IiME is run by volunteers with no funding for help lines, phone bills or charity premises yet we receive a lot of calls for help from patients who have been let down by every agency whose job it is to do this kind of work. Once the patient's medical record states that a person has ME it seems the societal infrastructure established to support sick people in need either freezes and gets modified as ME is not seen as a 'real' illness - a legacy of the failed MRC policies and the abdication of responsibility by government, CMO and health departments.   
 

This is why one cannot compromise.