Highly recommended authors: Dr Byron Hyde and Dr. Elizabeth Dowsett. Click here to read the full list of recommended authors.
Read Research and articles sorted by topic
Read Putting research and articles into context and A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy
A important note on the new direction of IiME: Like many M.E. advocates I was shocked to see the new full-of-hope M.E. group IiME slowly turn into yet another 'CFS' and 'ME/CFS' group over time.
This study of mixed fatigued patient groups will help nobody, least of all M.E. patients. M.E. is not a subgroup of 'CFS' nor 'ME/CFS.' Fatigue illnesses are not subgroups of 'CFS' or 'ME/CFS' or 'M.E.' either, they are diseases in their own right (eg. FM, Lyme, candida, MS and so on). Those with tick-borne infection and post-viral syndromes caused by gandular fever and other common viruses and so on, do not represent 'subgroups of M.E.' as IiME now claims.
'CFS' and 'ME/CFS' help nobody.
Considering this change, one wonders by what right they have to continue to retain the use of the term M.E. in any context. If you want to study groups of fatigue illnesses, you are of course free to do so, but you cannot ethically and scientifically claim at the same time that what you are saying relates to M.E.
I (and the rest of the HFME) am shocked that IiME (like MERGE) once one of the few 'good guys' has taken this terrible decision and new direction. We can only hope that somehow this decision will be reversed.
The discussion on MERGE, ‘ME/CFS’ and ‘CFS’ is also very relevant to what has happened to IiME, unfortunately.
Before reading this research/advocacy information given in the links below, please be aware of the following facts: 2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context. Unfortunately the author featured on this page (IiME) mixes together many of the facts of M.E. and 'CFS' and uses the terminology incorrectly. IiME also supports the flawed concepts of subgrouping 'CFS' or 'ME/CFS' and the concept of 'ME/CFS' generally. It is important that readers are aware that the HFME not only does not support referring to M.E. as 'CFS' or 'ME/CFS' or the mixing of facts relating to M.E. and 'CFS' etc. but is in fact actively involved in campaigning against such problematic concepts, for the benefit of all patient groups involved. Again, please see also: MERGE, ‘ME/CFS’ and ‘CFS’
1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.
A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.
In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.
2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.
Unfortunately the author featured on this page (IiME) mixes together many of the facts of M.E. and 'CFS' and uses the terminology incorrectly. IiME also supports the flawed concepts of subgrouping 'CFS' or 'ME/CFS' and the concept of 'ME/CFS' generally.
It is important that readers are aware that the HFME not only does not support referring to M.E. as 'CFS' or 'ME/CFS' or the mixing of facts relating to M.E. and 'CFS' etc. but is in fact actively involved in campaigning against such problematic concepts, for the benefit of all patient groups involved.
Again, please see also: MERGE, ‘ME/CFS’ and ‘CFS’
The Story of Sophia and M.E. from the Invest in M.E. website This is the heartbreaking story of Sophia, who through medical maltreatment and neglect, died of M.E. in 2005. This story illustrates all too tragically that M.E. is a serious neurological illness which is too often dismissed out of hand by doctors; sometimes with devastating consequences. An excerpt:
In July the professionals returned - as promised by the psychiatrist. The police ‘smashed the door down’ and Sophia was forcibly removed and taken to a locked room within a ’secure’ ward of the mental hospital. Despite the fact that she was bed-bound, she did not have even basic nursing care; her temperature, pulse and blood pressure (which had been 80/60), were never taken, her bed was never made, she was never washed, her pressure areas were never attended to and her room and bathroom were never cleaned. The nurse asked me to cook for her as the processed hospital food made her more ill. Sophia also had to deal with many nurses constantly going into her room and talking to her.
The psychiatrist made it quite clear to Sophia’s solicitor that he would not release Sophia. However, two weeks later, after a tribunal lasting 8 hours, she was released. It was too late; the damage had been done. Sophia relapsed, not to where she had been before, in spring 2003, but to a hell hole to which she had never been. She never recovered from their maltreatment. She never stood a chance.
The result of the inquest into the death of Sophia Mirza on Invest in ME
Suzy's story on Invest in M.E.
'Less than a year on from the start of this bad deterioration, the illness turned into a nightmare of the worst kind.
The months dragged by. For the first two years they saw Suzanne deteriorating in her bed-bound existence, often unable to communicate (let alone hold a spoon) even by blinking or finger movement. By the time 8 months had passed Suzanne could only manage to wake up for about 2 or 3 ten minute periods----- if we were lucky ----- out of each of the two separate hours in the day we chose to try and wake her. In order for this to happen Mum or Dad had to spend 3 hours sitting quite still and silent in the cold dark beside her bed.'
Shannon's Story on Invest in ME
I'm 24 years old, with skin milk-white from staying indoors. I've been house bound and mostly bedridden for six years.
Even my dad doesn't believe me at times that I'm really sick. Or he latches on to some far-fetched explanation of things, or wacky new treatments. If a doctor tells him it's psychological, he's believed the doctor over me. I hate that. Always I have to defend myself.
My mother died, and there is no one to take care of me. I am very weak, and it's difficult to get food, and I can't eat processed food because of my sensitivities. I was wishing today that someone would walk into the room where I was lying on the floor, helpless and out of it, and bring me a warm bowl of chicken soup. It was five hours before I could get up and open a can of tuna. At last count, I had gone 16 days without bathing.
A Personal Story - Sheila Barry (on Invest in M.E.)
'I personally regard psychiatry as a growth industry. The number of conditions identified as mental illness has grown tremendously in recent years. MS and Parkinson's, among others, were earlier identified as psychiatric illnesses and recently I read that 'shyness' has been classified as a psychiatric condition. How do they arrive at these decisions. Psychiatrists classify a condition when a number of them are able to agree a criteria. They have no diagnostic tests. It is simply a matter of opinion.
I believe that the actions of the psychiatric lobby to have ME classified as a psychiatric illness and to prevent research into the cause, and a diagnostic test were the major reason that my daughter [a ME sufferer,] chose to end her life.'
IiME Response to NICE Guidelines
IiME have published a response to the NICE Draft Guidelines for CFS/ME. Our response - PDF here /Nice pro-forma here.
The FINE trials and the PACE trials seem to be the two ugly sisters of MRC policy on ME. Read one participant's experience of these costly trials (Includes a basic overview of the sham FINE and PACE trials.)
'The FINE trials and the PACE trials seem to be the two ugly sisters of MRC policy on ME - leaving biomedical research eternally to play a Cinderella role.
Their results are pre-judged due to the biased criteria used for selection and the methods employed in performing
One thing these trials seem to be clearly showing is the myopic and unscientific approach to scientific research being shown by the MRC in concentrating on psychiatric paradigms which, at best, can only attempt to cope with ME and, at worst, will seriously affect a person with ME's health.'
Forced to accept CBT for a neurological illness? Read this first.
A campaign to make ME in schools a notifiable illness.
Vaccinations, Antibiotics & ME
A topical subject - read more here. Read of Vaccines and ME link in Norway.
Topic of the Week - ME Epidemics
See Dr. Byron Hyde's little red booklet of What is ME - produced for the Invest in ME ME Conference 2006 Click here
Invest In M.E. 2006 Conference DVD
Includes lectures by Professor Hooper, and Dr Byron Hyde MD. and many more.
Read a short review of the DVD by Tom Kindlon
Read more about the conference here. Purchase the DVD here.
The Gibson Enquiry: An overview by IiME Everything you need to know about the Gibson Enquiry into M.E. on one page, compiled by IiME.
Invest in M.E.'s response/summary of the final Gibson Enquiry report "This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research. It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems which only an intense research programme can help resolve. It is an illness whose time has certainly come. "
Thus concludes the report from Dr Gibson’s Group on Scientific Research in to Myalgic Encephalomyelitis (ME) – otherwise known as the Gibson Inquiry. Unfortunately, that time is too late for some of the victims who have lost their lives to this devastating illness.