Name preference? CFS, ME-itis (2 versions), ME-opathy, SEID, or Ramsay

[Dolphin]

I missed that one. Sorry.

You can always add options if you want (and you're not at some limit).

 

[snowathlete]

Your response completely changes the way that I would answer. I have ME, and I would not want the IOM criteria to be named ME, nor do I believe that is what they are trying to describe.

Which is fair enough. Question though: Say the IOM's SEID gets adopted, research using their definition is conducted and then a drug is found that gets approved to treat that disease; would you refuse the treatment because you don't have SEID, you have ME still, or would you want the treatment? Serious question, because I could see people who are adamant they have ME and will continue to call their disease ME, ending up in this situation one day.

 

[lansbergen]

Which is fair enough. Question though: Say the IOM's SEID gets adopted, research using their definition is conducted and then a drug is found that gets approved to treat that disease; would you refuse the treatment because you don't have SEID, you have ME still, or would you want the treatment? Serious question, because I could see people who are adamant they have ME and will continue to call their disease ME, ending up in this situation one day.

Depends on the drug.

 

[Dolphin]

Which is fair enough. Question though: Say the IOM's SEID gets adopted, research using their definition is conducted and then a drug is found that gets approved to treat that disease; would you refuse the treatment because you don't have SEID, you have ME still, or would you want the treatment? Serious question, because I could see people who are adamant they have ME and will continue to call their disease ME, ending up in this situation one day.

People who are school of thought that focus a lot on saying ME is not CFS often quote evidence from CFS and ME/CFS studies. Both the International Consensus Criteria paper and International Consensus Primer have lots and lots of references to CFS and ME/CFS studies.

 

[snowathlete]

Depends on the drug.

Good point.
Rituximab seems a good example. Assume it is found to work well in ~60% of patients, but no solid data on subgroups and why it works in some but not others. With a mortality rate from treatment of between 2.4-10.4% (as in this mortality study).

 

[beaverfury]

Neuroendocrine immune dysfunction

 

[Sean]

You can always add options if you want (and you're not at some limit).

Ah, I though you couldn't edit questions, but turns out that means you can't edit existing questions, but can add new ones. Thanks.

----------------------------

Myalgic Encephalitis is now an option as: ME-itis 2

I had already allowed the option to change your vote, so please feel free to do so if you wish.

 

[Ember]

Both the International Consensus Criteria paper and International Consensus Primer have lots and lots of references to CFS and ME/CFS studies.

In addition, members of the International Consensus Panel have collectively:

• diagnosed and/or treated more than 50,000 patients who have ME;
• more than 500 years of clinical experience;
• approximately 500 years of teaching experience;
• authored hundreds of peer-reviewed publications, as well as written chapters and medical books; and
• several members have co-authored previous criteria.

But some will use the state of the research to justify inaction.

 

[Dolphin]

But some will use the state of the research to justify inaction.

Some will highlight that if patients were to depend on ME only studies, there is little to rely on. Byron Hyde talks a lot about this and that in ME but has published little in the last two decades: to the medical community these days opinions that are not published have little status.

One prominent ME is not CFS campaigner doesn't tend to rely on ME and ME/CFS studies. Instead, they seem to rely when giving advice on ME on general information (not illness-specific) and information from supplement companies and the like. I find information from ME/CFS and CFS studies more informative: similar in a way to the International Consensus Primer authors who quoted lots and lots of CFS and ME/CFS studies.

 

[Ember]

Some will highlight that if patients were to depend on ME only studies, there is little to rely on.

By "some," I was referring especially those who fund the research, i.e., the state of the research becomes the reason for not funding the necessary research.

 

[taniaaust1]

I wish this was a mutiple choice poll as there are several names I wouldnt mind. Im not pushing for the ME names like I would of done otherwise as I really dislike the new definition and do not want it put onto one of those as it will just further confuse the whole ME situation.

I also feel like it would be a dishonour to Ramsey to put his name to that new bad definition. Thou I do like Ramsey Disease.

I think we need to be changing the new definition first as I know there are others like myself who do not want the ME label we prefer put onto a crappy definition.
.......
If we have to keep the new definition .. I prefer the name Tahoe Disease or TD for short... to help bring to attention that this disease happens in outbreaks.

 

[MeSci]

I missed that one. Sorry.

I forgive you! I'm just frustrated that it is almost never mentioned as a possibility.

 

[MeSci]

I wish this was a mutiple choice poll as there are several names I wouldnt mind.

Same here. Thanks, @Sean for adding myalgic encephalitis, but I now have the problem that I like several names equally! It may be possible to make the poll multiple-choice.

Can you clarify - when you have listed the ME options with '-itis', '-opathy', etc., you're just doing that to highlight the fact that there is more than one version of ME, and not suggesting that '-itis', etc. should be part of the name, are you? If so (unless I am the only Aspie-prone person who is reading things too literally) maybe it would be better to just put 'ME' three times, with the full name in brackets after each one. (Hope I'm not being too awkward - I'm not trying to be!)

 

[Sean]

but I now have the problem that I like several names equally! It may be possible to make the poll multiple-choice.

My understanding is that the forum software doesn't offer a preferential poll, only one where all choices are equal.

Also, in the real world we only get to choose one.

However feel free to list your second or third preferences in the thread. My second choice would be SEID.

Can you clarify - when you have listed the ME options with '-itis', '-opathy', etc., you're just doing that to highlight the fact that there is more than one version of ME, and not suggesting that '-itis', etc. should be part of the name, are you?

Correct, just using it to distinguish between them.

 

[MeSci]

My understanding is that the forum software doesn't offer a preferential poll, only one where all choices are equal.

Also, in the real world we only get to choose one.

However feel free to list your second or third preferences in the thread. My second choice would be SEID.

I like them equally. It is possible to make polls multiple-choice here - I have done it myself, e.g. this one. I'm not looking at a preferential poll, just one where you can tick multiple options if you have more than one favourite.

 

[Sean]

I'm not looking at a preferential poll, just one where you can tick multiple options if you have more than one favourite.

I understand, but as I said, in the real world we only get to choose one.

So, if you have to choose one, what would it be?

 

[MeSci]

I understand, but as I said, in the real world we only get to choose one.

So, if you have to choose one, what would it be?

Surely it's not a matter of individual preferences as much as how many votes are received for each option?

I cannot choose between two options.

 

[Min]

Ramsay disease: VIA: Maryann Spurgin with Liz Willow and 4 others.

[Note here in this article that Ramsay describes M.E. as a disease of CIRCULATORY impairment (as well as cerebral involvement and abnormal muscle metabolism after excercise).

Although Ramsay at the time only outlined pale skin & other clinical observations of circulatory impairment, research done in the 1980's, 1990's & early 2000's elaborated & found out the problems w/ circulation. They include:

1. Dr. L. O. Simpson's work on misshapen RBC's lasting for days following excercise, leading to inadequate delivery of oxygen to tissues & organs & failure of the blood to clear toxins.
2. Dr Streeten & Dr. Bell found hypovolemia, low blood volume, a blood volume of 50% of normal when studying Bell's patients, leading to orthostatic intolerance, a state of being in shock.
3. Rowe & Calkins: dysautonomia & orthostatic tachycardia.
4. Drs. Cheney & Lerner found many cardiac abnormalities. Lerner found damaged heart tissue & viruses in the heart. Cheney found diastolic heart dysfunction.
These four things well explain the circulatory impairment that was originally *observed* by the careful & meticulous clinician.
Ramsay's article follows:

The Myalgic Encephalomyelitis Syndrome ~ A. Melvin Ramsay M.A. M.D.

The clinical course of the Myalgic Encephalomyelitis syndrome is consistent with a virus type of infection. It most commonly commences with an upper respiratory tract infection with sore throat, coryza, enlarged posterior cervical glands and a characteristic low-grade fever with temperatures seldom exceeding 101°F. Alternatively there may be a gastro-intestinal upset with diarrhoea and vomiting. In 10% of the 53 cases we reported between 1955 and 1958 the onset took the form of acute vertigo often accompanied by orthostatic tachycardia.

The prodromal phase is characterised by intense persistent headache, paraesthesiae, blurring of vision and sometimes actual diplopia. Intermittent episodes of vertigo may occur at intervals both in the prodromal and later phases of the disease. Loss of muscle power is accompanied by an all-pervading sense of physical and mental wretchedness. Some patients lack the mental initiative to cope with the situation; on the other hand the more extrovert types show a determination not to give in to the disease but their efforts to compel their muscles to work only serves to make the condition worse....

Read more here.

 

[Andrew]

If they were dead set against calling it ME or ME/CFS, they should have called it Acheson-Ramsay Disease. Acheson for first writing about ME, and Ramsay for all the work he did describing it. The only reason I'm not simply suggesting "Ramsay Disease" is because there is a Ramsay Hunt disorder and I want to make it a clear distinction.

 

[Sean]

Discussion specifically about the Ramsay option here:

http://forums.phoenixrising.me/inde...-ramsays-disease-is-better.35707/#post-561346