http://c4jrme.110mb.com/supplement223.htm Here's a good description of a ME outbreak in 1970s by the guy who investigated it. Im amazed at this description as it describes how my symptoms at been (probably the most accurate description of found of what Ive experienced from the "flu storm" onset, to the hypersomina where I slept for long periods.. days at a time, i wouldnt wake.. to the things like hands not holding onto things and legs giving way etc etc).
Hi Tania
Having read the article Tania, although there are similarities between what the author personally calls IVN, there are marked differences, which suggest (despite his claims) that IVN is
not ME and would more aptly be described as PVFS with evidence of CNS dysfunction as classified at G93.3
We have been discussing Ramsay on historic ME and the distinctions he made between ME and PVFS earlier in this thread and the example here would seem to fit there.
Historic ME literature speaks strongly about an enteroviral association.
The historic ME literature, the Enteroviral Foundation of USA and other research report that enteroviral infections present as a short term (3-7 days on average) gastro intestinal or respiratory illness, not a flu illness of the nature characterised by IVN.
IVN is according to the authors characterisation in that article, a flu storm that can last from weeks to over a year. Clearly the infectivity periods are very substantially different, suggesting completely different illnesses.
The author suggests that IVN occurs in epidemics.
I would have liked to have researched this point further but I was unsuccessful and couldnt find any information on IVN doing a pub med search, a general google or wikipedia search. (Thought that is not to say it is not there. Perhaps someone else might have better luck?)
A search at wrong diagnosis.com, did not return anything on IVN specifically, but did make reference to
leucocytoclastic venulitis . Whether this is related I am uncertain, but it appears to be a vascular syndrome associated with a hypersensitive reaction triggered by a drug, other substance or an infectious agent. Nothing more is mentioned.
The author did suggest that a literature search he conducted in the 1970s on EPIDEMIC PHLEBODYNIA (EP), '(meaning painful veins), made reference to 3 reported epidemics. However, he distinguished his patients illness from EP, on the basis that his patients presented with more symptoms.
So I had trouble finding anything on IVN and or epidemics associated with it.
All the same, the author states that the epidemics associated with IVN report spontaneous bruising and painfully swollen veins. I imagine though that these are symptoms you would commonly expect in a vascular condition and may be the key characteristic of that illness. However, they are not features I recall reading about in the historic ME literature as that body of work related to epidemic or sporadic cases. Again, I would say that this feature of what the author calls IVN would distinguish it from ME as reported in the historical medical literature.
The author goes on to suggest that IVN epidemic cases were often milder. Again, I think this is at odds with ME in historical epidemics, where this was not the general picture given.
Strangely he says that those who had the bruises and painful veins might have presented at the onset of the illness and therefore might go unnoticed. Personally, I would have thought that most people who experience vascular associated pain and or sudden bruising, generally, would not fail to notice such, unless they are in the light coma state he also reports with IVN. Again, I dont believe the heavy sleep/coma state is generally observed with ME. Though there have been reports of drowsiness if I am not wrong.
For all these reasons, I do not believe the author can successfully claim that IVN is the same as ME.
Personally, I do not find this article a good summary on ME at all at. It might be on IVN, but I know little about that, so cannot comment.
I believe that for someone coming to this thread, who is trying to understand the distinctions we are trying to make between ME and CFS, might find that article quite confusing.
For a start, the author refers to ME epidemics as CFS.
This is historically inaccurate. CFS was devised by the CDC in 1988 and has a distinctive case definition. Historical ME, as discussed in this thread and reported in the literature, dates back to 1934 and has its own distinctive characteristics and definition. The CDC also recognises the distinction between the two illnesses.
The author also claims that ME, CFS and the illness that he refers to as IVN are all the same. As I have tried to point out, I do not believe this is correct.
Even though the author believes that IVN, CFS and ME are the same he then states:
The name chronic fatigue syndrome was coined and criteria were changed and simplified somewhat.
If CFS was changed, how can it thereafter remain the same as ME and or IVN and therefore, how can they all be the same?
The author then states:
How is chronic fatigue syndrome/myalgic encephalomyelitis different from IVN? I believe it is the same disease.
I think that is fair comment. He personally believes that IVN (that might be similar in some respects but is vastly different to ME in many others), is the same disease. However, for the reasons expressed, I do not agree.
However, some what confusingly, having stated that he believes them to be the same, he then goes on to mention how they are not!
Although no vascular features are mentioned in CFS, there are allusions to vascular involvement in ME.
So even though he makes the argument that IVN, CFS and ME are the same, the vascular features which appear to be one of the distinctive features of IVN (particularly the vascular pain and bruising I would have thought) are not mentioned in CFS and are simiply alluded to, in ME.
So this is very contradictory, confusing and directly at odds with his main premise, that IVN, CFS and ME are all one and the same.
He then states:
Could this syndrome be due to a mutant polio virus that escapes immune detection? Earlier I said that the early epidemics of ME/ENM/CFS were always in association with a polio outbreak. And that those who came down with ME/ENM/CFS were immune to polio.
Whilst ME has historically been associated with enteroviral outbreaks such as polio, CFS has not. CFS was created in 1988. As stated previously in this thread it has a distinctive case definition from ME as defined in historic literature. Further, the CDC recognizes that ME and CFS are distinct illnesses. The WHO recognizes such as well. ME has a distinct classification at G93.3 and CFS does not, it is noted only in the index ICD 10 AM.
So to sum up why I think this article should be avoided on the topic of ME:
a. the author claims all the conditions are the same, but on the basis of matters discussed in this thread, I would have to say I strongly disagree.
b. the author uses terms in a confusing, interchangeable manner and is sometimes contrary on the points he is trying to make to establish that all these illnesses are the same.
The author states that a literature search on EPIDEMIC PHLEBODYNIA (EP),( meaning painful veins ) is not the illness he has termed IVN in his patients - because they presented with many more symptoms. He then stated that the findings of his literature search on ME suggested IVN
was similar to ME. Whilst, it might be that they do share some similarities, they are by no means the same and therefore IVN cannot be said to be ME on my analysis and understanding.
At best, I believe IVN would represent a PVFS with evidence of CNS dysfunction as classified at G93.3 ICD 10AM
