About Guidelines
Guidelines - what they are
One of the basic problems with treatment of ME is the original diagnosis of the illness.
Invariably it is too late and the current environment in the UK means that diagnosis may cover a broad range of illnesses with similar symptoms which are brought together under one diagnosis - sometimes ME - sometimes CFS.
In order to establish correct and early diagnosis there needs to be a standard clinical diagnosis method used throughout the country.
This area is currently clouded with up to four sets of diagnostic criteria being available for use.
When a doctor or paediatrician gives a diagnosis of myalgic encephalomyelitis then they do this currently by exclusion of other illnesses and by means of basic blood tests.
Diagnostic guidelines are meant to be a means to assist in diagnosis.
Why they are important
ME in the UK has suffered from the lack of adoption of a clear clinical diagnostic tool, resulting in ME sufferers not being identified correctly.
Instead, ME has been confused with other conditions that have chronic fatigue as a symptom.
This obfuscation has lead to a psychiatric lobby being able to diagnose ME sufferers with "somatoform" disorders, such as "Faulty Illness Belief.".
If a diagnosis is given to a patient based on a different interpretation of an illness then the diagnosis may be flawed.
In an illness such as ME, where politics and prejudice have affected how research is funded in the UK, using flawed diagnostic criteria or even using different criteria means that it will be even more difficult to establish a proper baseline for treatment/cure.
IIMER Position
A common, workable set of standard guidelines - adopted by all clinicians and researchers throughout the world - is an objective of Invest in ME Research.
It is one of the fundamental issues which needs to be resolved in order for myalgic encephalomyelitis to be treated in the correct way.
Currently IiMER require any research we fund to use the Canadian Guidelines as a minimum and all members of the European ME Alliance (EMEA) have endorsed the Canadian Guidelines.
Guidelines for ME
Here are the more common guidelines which you may come across. To read more on these we have added some links where the discussion on the merits, or otherwise, of these criteria are discussed more fully.
Canadian Consensus Criteria (Carruthers et al.)
Clinical guidelines from 2003 which can also be used as a base for research criteria.
Findings from the study by Leonard A. Jason PhD (Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome) indicated that the Canadian criteria captured many of the cardiopulmonary and neurological abnormalities, which were not currently assessed by the Fukuda criteria.
The Canadian criteria also selected cases with 'less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms' and individuals selected by these criteria were significantly different from psychiatric controls with CFS.
A link to a full description of the Canadian Guidelines is held in the Library - click here.
An additional 2005 overview document can be viewed via this link.
A hard copy of this booklet can be ordered from Invest in ME Research - current price is
£1.75 plus postage (subject to being in-stock).
Invest in ME Research are the UK distributors for the current Canadian Consensus Criteria Guidelines and welcome these guidelines.
We have for a long time stated that we support an evolutionary development and improvement of the Canadian Guidelines.
Myalgic Encephalomyelitis: International Consensus Criteria 2011 (Carruthers et al.)
Another set of guidelines based on the 2003 Canadian Consensus Criteria and aimed at further defining myalgic encephalomyelitis
was published in 2011.
https://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf
The authors discuss the clinical application of their criteria, as well as paediatric considerations
and research applications.
The authors conclude that they -
“believe the International Consensus Criteria will help clarify the unique signature of ME”
and they
state unambiguously that “individuals meeting the International Consensus Criteria have
myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the
National Institute for Health and Clinical Excellence (NICE) criteria for chronic fatigue syndrome”.
See http://www.ncbi.nlm.nih.gov/pubmed/21777306.
This can be ordered from Invest in ME Research - current price is dependent on the number ordered.
IOM guidelines
In 2015, the Institute of Medicine (IOM), now the National Academy of Medicine (NAM), published a report on ME/CFS called “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” The IOM committee summed up the evidence base and proposed simplified rdiagnostic criteria based on inclusion of core symptoms (A substantial reduction or impairment in the ability to engage in pre-illness levels of activity, Post-exertional malaise (PEM), Unrefreshing sleep and either Cognitive impairment or Orthostatic intolerance).
They state that “ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients.”
The report also suggested a new name SEID (Systemic Exertion Intolerance Disease) which has not received worldwide acceptance.
The report made it clear that the Oxford guidelines (often used by UK psychiatrists) should no longer be used to define ME/CFS.
The IOM review of all current guidelines https://www.ncbi.nlm.nih.gov/books/NBK284898/ http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx
See IiMER Analysis of IOM Report - click here
See IiMER Analysis of P2P Report - click here
Fukuda Case Definition for CFS (1994)
This case definition has been the most widely used definition in ME/CFS research, and it has also been used for clinical evaluation of patients.
However, in recent years researchers and clinicians have started using the Canadian Consensus Criteria instead as the Fukuda Case Definition
does not require the hallmark symptom of post-exertional malaise.
Patients only need to have any four symptoms from a list of eight ( substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes;
muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours).
See also - http://www.cdc.gov/ncidod/diseases/cfs/about/definition/case_definition.htm
NICE Guidelines
NICE published a set of guidelines for CFS/ME in 2007.
They were contested and NICE was taken to judicial review - by patients.
They were rejected by most patient groups for being too broad and recommending Cognitive Behaviour Therapy (CBT) and Graded
Exercise Therapy (GET) as evidence based treatments.
ME/CFS NICE guidelines are being fully updated after a lot of pressure from patient groups and expected to be published in 2020.
https://www.nice.org.uk/guidance/indevelopment/gid-ng10091
Eventually these were reviewed and a new set of guidelines were developed and a draft document was published in 2020.
NICE was to publish these final guidelines in August 2021 but then went back on that decision hours before the publication date - ostensibly due
to outside influences forcing a further review that was only to be discussed by selected parties in a secret meeting.
After months of delay, including a fabricated and pointless roundtable meeting the 2021 guidelines were published on 29 October 2021.
A review was made here https://www.investinme.org/ng206-guidelines-publication-oct2021.shtml
[see more IiMER statements on NICE]
Oxford Criteria
A set of criteria created by and for psychiatrists - these
criteria are far less rigorous and may include patients with fatigue as their only symptom.
As such it allows far too many possibilities of inclusion of non-ME patients and serves no
useful purpose, other than to aid the assertions of psychiatric groups who see ME as a
somatoform disorder.
They now serve no real useful or scientific purpose.
These criteria have been formally rejected by the US NIH P2P report and the Agency of Healthcare Research and Quality Report.
https://effectivehealthcare.ahrq.gov/topics/chronic-fatigue/research
The RCPH Guidelines
These guidelines were published in 2004.
The evidence base was poor at the time and remains so.
Much of the paediatric research has concentrated on behavioural aspects of the disease and there are large gaps to be covered to understand fully paediatric ME.
Unfortunately, much of the published research has conflated chronic fatigue and CFS and ME all into one condition making life difficult for children and their families.
http://www.rcpch.ac.uk/system/files/protected/page/RCPCH%20CFS.pdf
Frequently Asked Questions
Here are some frequently asked questions about ME.
Click on the links below to expand the information.
ME stands for Myalgic Encephalomyelitis.
Benign Myalgic Encephalomyelitis (ME)/Post Viral Fatigue Syndrome (PVFS) is a multisystem, complex,
acquired illness with symptoms related mainly to the dysfunction of the brain, gastro-intestinal,
immune, endocrine and cardiac systems. ME/PVFS has been classified as a neurological disorder in the World Health
Organisation's International Classification of Diseases since 1969 (ICD 10 G93.3). Since 1992,
the term "Chronic Fatigue Syndrome" (CFS) has been included in the Alphabetical Index and indexed to G93.3.
The Chief Medical Officer's Report on the subject of CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) issued in
January 2002 recognises that "CFS/ME should be classed as a chronic condition with long term effects on health, alongside other
illnesses such as multiple sclerosis and motor neurone disease
To date there is no known specific medical diagnostic test to determine or confirm a correct
diagnosis nor is there any specific treatment for this condition.
Other Links:
History and Classification of Myalgic Encephalomyelitis
Anyone can get ME. It is more common in women than in men. In children the ratio between
boys and girls tends to be the same up until puberty after which time it is more common in girls
than in boys.
However, epidemiological data is lacking and further difficulties in assessing the research data
is the use of at least five different criteria for research or diagnosis (CDC, Oxford, NICE, Canadian Consensus (GCC)
and International Consensus Criteria (ICC)) all purporting to study patients with a diagnosis of ME, PVFS , ME/CFS or CFS.
Further Information: click here
Estimates vary between 0.11% and 2.6% of the population depending on the criteria used. In the UK the most often cited prevalence figure is 0.4% or 200 000 to 250 000 people of which 25% are children.
Symptoms include overwhelming post-exertional fatigue from mental or physical activity; dysfunctional sleep; pain; problems with memory; sensitivity to light, touch and sound; problems with standing and balance; problems with body temperature and weight; and recurrent flu-like symptoms; that persist for at least six months in adults; or three months in children (Carruthers et al, 2003).
There have been several documented outbreaks of ME but evidence of person to person transmission is lacking. ME is more common in some families pointing to a genetic component but there is no evidence of ME being inherited as such.
Currently there is no cure for ME. Treatment is based on managing the condition and providing symptom relief. Advances in treating and understanding ME are made every year, and progress in research to find a cure or effective treatments is very encouraging.
There are no MHRA (Medicines and Healthcare Products Regulatory Agency) or FDA (U.S. Food and Drug Administration) approved drugs
to treat ME yet.
Treatment is based on managing symptoms and avoiding over-exertion.
Patients find pacing mental and physical activities most beneficial.
Drugs such as Ampligen and Rituxan have been trialled but they have not proven to be successful.
http://www.fda.gov/drugs/newsevents/ucm337759.htm
http://clinicaltrials.gov/ct2/show/NCT02229942?term=rituximab+me%2Fcfs&rank=3
As the cause of ME is unknown and it often follows an infectious episode with relapsing and remitting nature patients with a diagnosis of ME/PVFS/CFS are permanently excluded from donating blood. This applies to even those patients who say they have recovered. http://www.transfusionguidelines.org.uk/dsg/wb/guidelines/ch013-chronic-fatigue-syndrome
Diagnosing ME can be a challenging process as there is no single laboratory test yet available to prove or rule out ME. A careful history taking is important and if the symptoms or test results are attributable to another active disease process ME should be ruled out. Conditions such as major depressive disorder, MS, eating disorders, bipolar disorder, thyroid disorders, Addison's disease and some cancers for example can present themselves with symptoms such as fatigue, sleep disturbance, pain and cognitive problems and should be ruled out before a diagnosis of ME is made. If another active disease process is well under control and the patient still has symptoms that fulfil ME criteria then an ME diagnosis can be made.
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