The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Articles sorted by author: Lesley Ben

Articles by UK M.E. patient/advocate Lesley Ben

The WHO ICD in relation to M.E. and ‘CFS’ by Lesley Ben

"The World Health Organization (WHO) classifies all known diseases in its International Classification of Diseases (ICD).  The ICD is used in reporting diseases to the WHO from around the world.

The WHO states:

‘The ICD is the international standard diagnostic classification for all general epidemiological, many health management purposes and clinical use.’ - ‘International Classification of Diseases (ICD)’

Myalgic Encephalomyelitis (M.E.) has been recognised and classified by the ICD since 1969.  In the version of the ICD currently in use in most of the world except the US, ICD-10, M.E. is classified as a neurological disease.

M.E. is often denied or discredited by doctors, policy-makers and the general public.  It is important for our ongoing efforts to have M.E. taken seriously as a neurological disease that the WHO recognises it as such

Whereas those who deny the reality of M.E. work to muddy the water and obscure the medical reality, the ICD should clarify it.  Clarity should help us, and the ICD is in theory an instrument of clarity.  Unfortunately, the ICD is in practice not always as clear as it should be.  Classification of diseases should be a means of clarification and disambiguation; where the ICD is not perfect, we can work to improve it.

It is possible that the current entries for M.E. and Chronic Fatigue Syndrome (‘CFS’) may be subject to change in the next version of the ICD, work on which is currently underway.  Some M.E. patients and advocates foresee trouble ahead, although proposals for revision have not yet been made public.  If the classification of M.E. as a neurological disease is threatened, we should oppose this as forcefully as possible.  This paper gives the basics of the ICD, which may be useful when considering the issues involved in revision. 

The ICD is not enforced as we might wish.  Despite the classification of M.E. as a neurological disease, patients continue to encounter disbelieving or disrespectful doctors who trivialise the condition, confuse it with the very different entity ‘CFS’ or view it as psychological, and offer inappropriate treatments.  Some of us look at the gap between the theory of the ICD and the practice of medical treatment and government policy, and wonder whether the ICD has any effect on reality. 

Despite the problems, the ICD classification of M.E. as a neurological disease is very important, as it indicates official recognition of the disease by the medical and scientific establishment.  It may benefit M.E. patients to be aware of the facts regarding ICD classification; it may strengthen our confidence in the facts established by decades of scientific research, to know that we have the authority of the World Health Organization behind us."

Who benefits from 'CFS' and 'ME/CFS'? by Jodi Bassett and co-written and edited by Lesley Ben.

For whose benefit was ‘Chronic Fatigue Syndrome’ created, and for whose benefit is it so heavily promoted despite its utter lack of scientific credibility? Who benefits from Myalgic Encephalomyelitis and ‘CFS’ being mixed together through unscientific concepts such as ‘CFS/ME’ and ‘ME/CFS’ and Myalgic ‘Encephalopathy’? Who benefits from the facts of M.E. remaining ignored, obscured and hidden in plain sight?

This paper looks at all of these very important questions.

Essential reading for all M.E. patients and advocates.

The Lightning Process by Lesley Ben

"Positive thinking, empowerment, the creation of helpful new neuronal pathways and so on may be helpful to all people who are seriously ill.  There is certainly a feedback mechanism between the mind and body.

However, if recovery can be achieved by changing the ill person’s beliefs and curing the body via the mind-body link, then the illness was not ME.  In such a case the illness was psychosomatic and involved those ‘erroneous illness beliefs’ beloved of the psychiatric lobby. 

(Similarly, if regulating adrenaline via the mind-body link effects a cure, then the illness was not ME but adrenal dysfunction.  It should not need saying that ME involves dysfunction of many systems besides adrenal regulation)

To claim that LP can cure ME is offensive.  It implies that the illness is psychiatric, either in its origin or in its perpetuation mechanism.  (Strangely, LP practitioners deny this; using doublethink and doublespeak that Orwell would have marvelled at, they state that the illness is physical while claiming that it can be cured by psychological methods.)

To claim that LP can cure ME is politically harmful.  As above, LP practitioners appease patients by stating that the illness is physical, while playing into the hands of the psychiatric lobby by seeking to demonstrate that it is in fact psychological in that it can be cured by a ‘talking therapy.’

To claim that LP can cure ME is dangerous.  It is crucial that people with ME do not push themselves beyond their physical limits.  Study after study has proved that Graded Exercise Therapy (GET) has been proven to be damaging for this reason.  LP suggests that people with ME are ‘stuck’ and do not challenge themselves, possibly due to fear of the consequences of exertion.  The opposite is true: most people with ME tend to overdo it, and only by bitter experience learn the terrible consequences of doing so.   While there is no cure yet for ME, the most important thing sufferers can do to help themselves is not to go beyond their limits.  If encouraged to disregard their limits by LP, ME sufferers may do themselves irreparable harm."

A new section has been added to the Dr. Paul Cheney  page: 'Is Cheney talking about M.E. or 'CFS'?' by Lesley Ben

A new page entitled MERGE, ‘ME/CFS’ and ‘CFS.’ has also been added to the site, co-written by Lesley Ben. This page also asks whether or not MERGE/MERUK are currently studying M.E. patients or mixed 'CFS' patient groups and what the implications of this change are for patients, and scientifically and ethically.

Lesley Ben is quoted in: Problems with the so-called "Fair name" campaign: Why it is in the best interests of all patient groups involved to reject and strongly oppose this misleading and counter-productive proposal to rename ‘CFS’ as ‘ME/CFS’

"I just received a Newsletter from MERUK (formerly ‘MERGE’) which included a piece by Cort Johnson, backing the Fair Name campaign. It sounds so reasonable! So does the Fair Name website! They seem so moderate, willing to compromise etc. The name 'ME/CFS' is put forward as inclusive and conciliatory, as though they bring together all the warring factions in harmony. They make their opponents seem unreasonable, unrealistic and hot-headed. But it is based on wrong premises! Their claims are all bogus! There is a skill which some people have, of seeming to occupy the centre ground, of adopting a calm, reasonable tone of voice so that any disagreement will seem unreasonable and shrill and pugnacious. Simon Wessely has this skill. If one reads his writing, without thinking about the issues, he sounds reasonable and persuasive. The Fair Name campaign seems to have this skill also."

"The impossible situation in which people with ME are trapped was intentionally created by "insurance, government & pharmaceutical company overlords." I am continually amazed that they have been so successful at this, in a supposedly democratic world, with all its checks and balances. The Wessely school has somehow been allowed to shape and define reality. The psychiatrists and their big-money overlords seem to make such an efficient and unchallengeable team. Meanwhile, the ME world is splintered, full of factions fighting each other, rather than the real enemy. This 'Fair Name' campaign seems to be yet another counter-productive exercise in shooting ourselves in the foot. It makes me, too, "want to SCREAM until my voice is gone." Lesley, M.E. advocate

Antioxidants and M.E. by Lesley Ben

Th1 and Th2, cancer and M.E. by Lesley Ben

Lesley Ben is quoted in: Problems with the use of 'ME/CFS' by M.E. advocates by Jodi Bassett

  • the illness ALREADY HAS a name - myalgic encephalomyelitis
  • the illness already has a definition (Dr. Byron Hyde, Nightingale Definition of M.E., 2006)
  • any other name (and definition) distances the illness from original research (Ramsey, Richardson, Dowsett)
  • 'CFS' is meaningless, denies the biomedical reality of the illness, denigrates patients as psychologically ill and discredits their claims for medical treatment and welfare benefits
  • the above consequences were just what the CDC intended in creating 'CFS' (i.e. intended to discredit the illness and evade financial responsibility for the ill)
  • combining 'ME' with 'CFS' makes the composite term meaningless
  • the 'ME' part is meaningless if it means 'ME-opathy' (no such thing)
  • the 'ME' part cannot stand for two terms at once - this is sloppy and will breed more confusion
    Lesley Ben, M.E. advocate

    Why patients with severe M.E. are housebound and bedbound by Jodi Bassett, edited by Lesley Ben