OneWaySurvival
Senior Member
- Messages
- 115
- Location
- USA
Although medicine is trending away from Eponyms (diseases named after people), there are certain situations where they are still appropriate, all of which may apply to the ME/CFS/SEID debate.
I support the idea of using this name, or some variation of it, as a solution for the worldwide patient community to unite and have a path forward out of the disarray ensuing from the IOM report.
First, I would like to point out how the IOM report itself discourages the use of a symptom-based name such as CFS, and yet they went right back there again and we are left with a similar problem with the name SEID, even though it is a major step forward to call this a disease.
However, if we patients are going to make a serious case for using the name Ramsay's Disease for future advocacy efforts (even though the medical community will likely argue over their own ME/SEID/CFS terminology for many years to come), we need to recognize that the name Ramsay's Disease might have to be modified to Melvin Ramsay Disease or perhaps Acheson Ramsay Disease for reasons I will state later.
I am interested in patient feedback, especially from the international patient community on using some variation of the name Ramsay's Disease.
Chapter 2 of the IOM report presents a historical context for the naming and possible re-naming of the disease(s) M.E. and CFS.
On page 28 of the IOM report, the history of ME and CFS is described:
Page 30 goes on to describe the negative impacts of the name "Chronic Fatigue Syndrome" which was notoriously named by the United States CDC in 1988.
This history acknowledges that a name based on symptoms is not ideal due to the ease in which single symptoms can be dismissed by doctors and the general public, and also because of the difficulty with translating the name into other languages. So, why did they settle on a symptom based name of SEID?! This same historical summary credits Sir Donald Acheson as first coining the name "benign myalgic encephalomyelitis" and then Dr. A. Melvin Ramsay as the one who defended the organic nature of the disease, encouraged the removal of the word "benign", and then continued to use the name M.E. for many decades after.
For these reasons, I propose the name Acheson Ramsay Disease as a flexible but historically accurate name until etiology and pathophysiology are further researched, and agreement can be reached on clinical and research definitions, processes which will likely take many years to complete.
While it may seem preferable to simplify the eponym to the shorter Ramsay's Disease, as a few others have pointed out, there is a potential deal-breaker with Ramsay's Disease.
Three other neurological diseases are already associated with another individual named James Ramsay Hunt (e.g. Ramsay Hunt Syndrome). This may not seem like a big deal to a lay person because Ramsay's Disease sounds very different from Ramsay Hunt Syndrome. But, I spoke with a doctor who was adamant about the likelihood that the panel and the medical community would reject it outright because of the overlap of these disease names. Doctors like to be crystal clear about their disease name descriptions.
However, this same doctor said the differentiating names of Acheson Ramsay Disease, or alternatively, Melvin Ramsay Disease would be acceptable.
The best name of these two proposals might come down to which name is more marketable, but definite consideration should also be given to whether Sir Donald Acheson is remembered by patients as having a long-term positive impact on this field. If not, then Dr. Ramsay alone should have this honor, and the name Melvin Ramsay Disease is offered as the most appropriate name going forward.
The above proposal leads me to ask 2 questions for the Phoenix Rising audience:
1) Are there any UK patients here that can give insight into the positive or negative impact that Sir Donald Acheson has had historically on M.E. patients?
2) What are people's opinions on the names Acheson Ramsay Disease or Melvin Ramsay Disease if the shorter Ramsay's Disease is "already taken" and therefore not viable?
- The name may be shorter and more memorable than the medical one
- Sometimes the medical name proves to be incorrect
- The syndrome may have more than one cause, yet it remains useful to consider it as a whole
I support the idea of using this name, or some variation of it, as a solution for the worldwide patient community to unite and have a path forward out of the disarray ensuing from the IOM report.
First, I would like to point out how the IOM report itself discourages the use of a symptom-based name such as CFS, and yet they went right back there again and we are left with a similar problem with the name SEID, even though it is a major step forward to call this a disease.
However, if we patients are going to make a serious case for using the name Ramsay's Disease for future advocacy efforts (even though the medical community will likely argue over their own ME/SEID/CFS terminology for many years to come), we need to recognize that the name Ramsay's Disease might have to be modified to Melvin Ramsay Disease or perhaps Acheson Ramsay Disease for reasons I will state later.
I am interested in patient feedback, especially from the international patient community on using some variation of the name Ramsay's Disease.
Chapter 2 of the IOM report presents a historical context for the naming and possible re-naming of the disease(s) M.E. and CFS.
On page 28 of the IOM report, the history of ME and CFS is described:
Myalgic Encephalomyelitis
Beginning in 1934, a series of outbreaks of a previously unknown illnesswere recorded around the world (Acheson, 1959; Parish, 1934-1980, 1978).
The illness was initially confused with poliomyelitis, but was eventually
differentiated and became known as “epidemic neuromyasthenia”
(Parish, 1978). The term “benign myalgic encephalomyelitis” was first
used in the 1950s to describe a similar outbreak at the Royal Free Hospital
in London (Wojcik et al., 2011). The details of each outbreak vary, but in
general, patients experienced a variety of symptoms including malaise, tender
lymph nodes, sore throat, pain, and signs of encephalomyelitis (Lancet,
1955). Although the cause of the condition could not be determined, it appeared
to be infectious, and the term “benign myalgic encephalomyelitis”
eventually was chosen to reflect “the absent mortality, the severe muscular
pains, the evidence of parenchymal damage to the nervous system, and the
presumed inflammatory nature of the disorder” (Acheson, 1959, p. 593).
The syndrome usually appeared in epidemics, but some sporadic cases were
identified as well (Price, 1961).
In 1970, two psychiatrists in the United Kingdom reviewed the reportsof 15 outbreaks of benign myalgic encephalomyelitis and concluded that
these outbreaks “were psychosocial phenomena caused by one of two
mechanisms, either mass hysteria on the part of the patients or altered
medical perception of the community” (McEvedy and Beard, 1970, p. 11).
They based their conclusions on the higher prevalence of the disease in females
and the lack of physical signs in these patients. The researchers also
recommended that the disease be renamed “myalgia nervosa.” Although
these findings were strongly refuted by Dr. Melvin Ramsay, the proposed
psychological etiology created great controversy and convinced health professionals
that this was a plausible explanation for the condition (Speight,
2013).
Over time, Dr. Ramsay’s work demonstrated that, although this diseaserarely resulted in mortality, it was often severely disabling, and as a result,
the prefix “benign” was dropped (Ramsay, 1988a; Ramsay et al., 1977;
Wojcik et al., 2011). In 1986, Dr. Ramsay published the first diagnostic
criteria for ME, a condition characterized by a unique form of muscle fatigability
whereby, even after a minor degree of physical effort, 3 or more days elapse
before full muscle power is restored; extraordinary variability or fluctuation
of symptoms even in the course of one day; and an alarming chronicity (Ramsay, 1986).
Despite Dr. Ramsay’s work and a U.K. independent report recognizingthat ME is not a psychological entity (CFS/ME Working Group, 2002), the
health care community generally still doubts the existence or seriousness
of this disease.
Page 30 goes on to describe the negative impacts of the name "Chronic Fatigue Syndrome" which was notoriously named by the United States CDC in 1988.
Patients often pointed out that ME/CFS, which includes symptoms in multiple systems
that occur for an extended period of time, involves much more than
fatigue, a level of complexity and impact not conveyed by the term “chronic
fatigue syndrome.” The term “chronic fatigue syndrome” also may be difficult
to understand in populations where English is not the primary language
(Bayliss et al., 2014).
This history acknowledges that a name based on symptoms is not ideal due to the ease in which single symptoms can be dismissed by doctors and the general public, and also because of the difficulty with translating the name into other languages. So, why did they settle on a symptom based name of SEID?! This same historical summary credits Sir Donald Acheson as first coining the name "benign myalgic encephalomyelitis" and then Dr. A. Melvin Ramsay as the one who defended the organic nature of the disease, encouraged the removal of the word "benign", and then continued to use the name M.E. for many decades after.
For these reasons, I propose the name Acheson Ramsay Disease as a flexible but historically accurate name until etiology and pathophysiology are further researched, and agreement can be reached on clinical and research definitions, processes which will likely take many years to complete.
While it may seem preferable to simplify the eponym to the shorter Ramsay's Disease, as a few others have pointed out, there is a potential deal-breaker with Ramsay's Disease.
Three other neurological diseases are already associated with another individual named James Ramsay Hunt (e.g. Ramsay Hunt Syndrome). This may not seem like a big deal to a lay person because Ramsay's Disease sounds very different from Ramsay Hunt Syndrome. But, I spoke with a doctor who was adamant about the likelihood that the panel and the medical community would reject it outright because of the overlap of these disease names. Doctors like to be crystal clear about their disease name descriptions.
However, this same doctor said the differentiating names of Acheson Ramsay Disease, or alternatively, Melvin Ramsay Disease would be acceptable.
The best name of these two proposals might come down to which name is more marketable, but definite consideration should also be given to whether Sir Donald Acheson is remembered by patients as having a long-term positive impact on this field. If not, then Dr. Ramsay alone should have this honor, and the name Melvin Ramsay Disease is offered as the most appropriate name going forward.
The above proposal leads me to ask 2 questions for the Phoenix Rising audience:
1) Are there any UK patients here that can give insight into the positive or negative impact that Sir Donald Acheson has had historically on M.E. patients?
2) What are people's opinions on the names Acheson Ramsay Disease or Melvin Ramsay Disease if the shorter Ramsay's Disease is "already taken" and therefore not viable?