Talk:Sophia Mirza

Writing the initial page

I have created this page as a simple entry for Mirza, briefly covering the facts of her death and hinting at the implications, which are more fully covered in the CFS page. This is my first article.

• I could not find information about Mirza's birth date, I calculated 1974 from the fact that she was 32 at her death in 2006.
• I have not covered the facts or issues in depth as I have nothing original to contribute and the sources do that much better than I can.
• I would create a link to the relevant section of the CFS article from the Implications section, but there isn't really a good candidate section for that.

Thanks for creating this page. How about a link back to the "Deaths" section in the CFS article (it might not have existed when you created this page).

One thing I would say though, is that I don't think this is the first recorded death from CFS. IIRC this was a claim made by the magazine[?] that reported it which later carried a correction.

MikeEsp 00:29, 27 November 2006 (UTC)

Indeed, there are many more deaths from CFS on record, official or otherwise. This is just the first official death in the UK. It is estimated that in some 5% of the cases CFS, or rather ME, results in death. Guido den Broeder 12:46, 15 March 2007 (UTC)

How does CFS cause dehydration

It is rather odd that the coroner saw CFS as the cause for the dehydration. Why, then, are most CFS patients not dehydrated? And how does it explain the dorsal root ganglia being "diseased" (no mention of what kind of disease)? JFW | T@lk 15:49, 27 November 2006 (UTC)

Yes patients may be dehydrated -- see Bell and Streeten's research. Sufferers may not have enough blood volume, and that's one of the reasons pwME are advised to increase intake of salt, as simply drinking more fluid could make it worse. It's probably a contributor to orthostatic intolerance. It's treated in the US with midodrine. 62.69.36.100 (talk) 08:37, 21 September 2008 (UTC)

The mortality rate is low. Death from ME/CFS furthermore comes in more than one way, most frequently from heart failure according to Jason. Dehydration does not explain the inflammation, the inflammation is what can eventually cause the kidney (or heart, or liver) to fail. --Guido den Broeder 12:52, 15 March 2007 (UTC)

Guido, there is no evidence whatsoever that inflammation of kidney (nephritis)/heart (myocarditis)/liver (hepatitis) occurs in CFS/ME. What is the source of your claims? JFW | T@lk 10:20, 8 July 2007 (UTC)

No inflammation there indeed, but metabolic failure. Guido den Broeder 20:21, 3 September 2007 (UTC)

The inflammation of the dorsal pathways could lead to abnormal neurological feedback, but since this is a multisystem disease there are plenty other compatible explanations, such as insufficiency of water balance hormones and/or reduced nerve signals from brain to kidneys. 62.69.36.100 (talk) 08:37, 21 September 2008 (UTC)

Regarding water retainment in ME/CFS: it is known from water tests (Behan, IIRC) that patients typically retain water much longer than healthy subjects even though they need to urinate much sooner. So I think dehydration not to be very likely, it would rather be failure to process water. Guido den Broeder 20:21, 3 September 2007 (UTC)

Sophia's mother says that Sophia reduced her water intake deliberately because she believed she was allergic to water. The information comes from Invest in ME, and was submitted directly by Sophia's mother and is not "faulty". --Sciencewatcher 20:55, 3 September 2007 (UTC)

The coroner specifically inquired whether there was cerebral edema which occurs in dehydration due to reduced water consumption, but wasn't. The kidney failure was apparently very acute. Has mention of this been edited out of the article? 62.69.36.100 (talk) 08:37, 21 September 2008 (UTC)

Please quote where she supposedly says something about 'allergic to water'. Guido den Broeder 21:37, 3 September 2007 (UTC)

"Between 2003 -2005, Sophia struggled hourly / daily to get back to the point of health she had prior to her incarceration. By July 2005, it seemed as if she had started to progress. In September, this monster of a disease took another turn. Sophia had become allergic to any and all types of food. Physically, she could eat, but the reactions were so severe, e.g. knives stabbing into her head, that this precluded her body being able to accept the food. Five weeks later, any sort of water or liquid had similar devastating effects on her; her glands would balloon-up and she felt as if the circulation in her legs was being cut off. She could only bear about 4 fluid ounces of water a day, which was used to moisten her mouth. At the end of October she got an ear infection. Her head and neck swelled-up like a football, she was in agonizing pain." That is from the article on the 25% me group site and the Invest in ME website (and the info comes directly from Sophia's mother). --Sciencewatcher 22:06, 3 September 2007 (UTC)

Exactly. Allergic to food, not to water. Guido den Broeder 22:29, 3 September 2007 (UTC)

The implication is that she also believed she was allergic to water. But the main point is that she believed that water was causing her symptoms, and because of that she reduced her water intake to a dangerously low level which then resulted in her death. --Sciencewatcher 22:33, 3 September 2007 (UTC)

It is not for you to say what she believed. Guido den Broeder 22:36, 3 September 2007 (UTC)

I'm not. It was her mother that said it (see above quote). You are misrepresenting the case by reverting my change. Please refrain from doing it in future. If you want to change the language, that's fine - go ahead - but don't revert the change. --Sciencewatcher 23:59, 3 September 2007 (UTC)

I'm assuming "dehydration due to CFS" means that regardless if she was actually allergic to water or not, CFS made her experience so. If the dorsal root ganglia is the "gateway" for sensory information entering the brain and for other information leaving the brain, and if hers showed signs of damage, then her bodily responses could have been greatly distorted beyond her control. I'm sure some people would prefer to think that she simply died of an abnormal belief, therefore was her own fault and not due to any disease process, but the above implies to me that it was more complicated than that. Perhaps an organic psychosis was involved, if not an outright organic distortion between her brain and bodily processes. Either way, the coroner believed the acute dehydration was a result of CFS pathology. - Tekaphor 02:54, 4 September 2007 (UTC)

But it wasn't the CFS that caused the dehydration, it was her deliberately reducing her water intake. Perhaps the pathologist did not know about this. It is not for me to speculate. It is important to put this information in, as it directly relates to the cause of death. And the changes in the root ganglia were consistent with Herpes infection, which does not cause dehydration. Therefore I am putting the info in again. --Sciencewatcher 14:10, 4 September 2007 (UTC)

As I explained above, the inquest made this clear. But obviously you know better! 62.69.36.100 (talk) 08:37, 21 September 2008 (UTC)

She "deliberately" reduced her water intake in the same way someone deliberately pulls their hand away from a burning flame. The issue is why there was a "burning flame" i.e "stabbing pains". It seems that these were complications arising from CFS, and it is highly unlikely that it would have occurred otherwise. We can't be absolutely certain the coroner was right, but their conclusion that she "died of dehydration as a result of CFS" seems to me just as clear as other statements about different deaths such as "died of lung cancer as a result of heavy smoking". - Tekaphor 10:27, 5 September 2007 (UTC)

If the coroner's report says it was because of CFS, then it is not for us to say otherwise. Thedreamdied 11:16, 5 September 2007 (UTC)

The coroner is free to conclude that CFS led to dehydration, but that doesn't say anything about the mechanism. In this case, the mechanism was that she became intolerant to oral fluids - as evidenced by the Wilson article. I don't find this strange at all.

I frequently complete medical certificates of cause of death. Any neurological (or other physical) condition leading to reduced oral intake could be classified as leading to dehydration and renal failure ("pre-renal"). If this then led to death, this would be completely legitimate. I fail to see what the problem is. I do have an issue with the mention of "allergy". JFW | T@lk 11:39, 5 September 2007 (UTC)

Thankyou for your professional input, JFW. I understand taking issue with the word "allergy". - Tekaphor 11:54, 5 September 2007 (UTC)

The allergy page seems to have it's own controversy. - Tekaphor 12:19, 5 September 2007 (UTC)

I totally agree. Nosologically, allergy is a very narrowly defined spectrum of responses to external chemical triggers (Gell & Coombs type 1 hypersensitivity). I totally appreciate that people pass off all sorts of reactions for allergy, but a UK coroner and expert pathologists would know better than swallow that.

This is my attempt to improve the allergy page. Work in progress. JFW | T@lk 16:43, 5 September 2007 (UTC)

She had symptoms, and she thought that it was due to food/water, but there is no actual evidence of that (and it seems highly unlikely). You mentioned there is "evidence" concluding that she became intolerant to oral fluids - can you point this out? It doesn't appear in the Wilson article - that only states that she reduced her fluid intake because she believed that the water was causing the symptoms. There is a huge difference... --Sciencewatcher 18:32, 5 September 2007 (UTC)

Additional info: it is known that putting your hand in a flame causes pain and a reflex reaction to remove it. It is also known that smoking causes lung cancer. However it is not known that CFS causes death by dehydration, and there is no known mechanism for being intolerant to water due to CFS. Therefore the coroner can't really conclude that the dehydration was caused by CFS unless there is evidence that that is the case. It seems that the coroner is basing this conclusion on the fact that the patient thought she was intolerant to water due to CFS (which seems unlikely). --Sciencewatcher 14:24, 6 September 2007 (UTC)

On water intolerance, see [1]. Guido den Broeder 16:02, 6 September 2007 (UTC)

It is talking about something completely different! It is discussing the effect of vasopressin on regulating water retention in the body. Here we are talking about drinking water causing severe CFS symptoms. It's pointless just searching for "water intolerance" because it is a very vague, non-scientific term. --Sciencewatcher 17:26, 6 September 2007 (UTC)

You yourself are comflating the kidney failure with her experience of reactions to drinking water on the assumption that they are related, but they aren't necessarily. Even ME patients who drink plenty fluids have been shown to have low blood volume (in some cases as low as 50% - enough to normally cause shock) and some US specialists use saline infusions or midodrine to treat this, which can improve orthostasis and cognitive functioning. 62.69.36.100 (talk)

Sciencewatcher, you're right that CFS is not known to cause death by dehydration, but it is known to increase the chances of acquiring strange intolerances, and Sophia's CFS was quite severe. Basically her CFS symptoms became so bad that she refused water. All we have is her mother’s testimony, and "stabbing pains in the head" sounds like a powerful motivator for avoidance regardless of the actual reality. The coroner probably should have said "due to CFS symptoms" rather than just "due to CFS". Besides, your last edit is OK and I don't think the article needs changing anyway. Guido den Broeder, the coroner's report is mentioned and so is the information from Sophia's mother, do you still think it needs changing?. - Tekaphor 02:32, 7 September 2007 (UTC)

Yes, the present text is still voicing an opinion. I propose to simply put: According to Sophia's mother, Sophia became intolerant to water and managed only 4 fluid ounces per day Guido den Broeder 09:25, 7 September 2007 (UTC)

I'm happy either leaving it the way it is, or making Guido's change. Feel free to change it. As for Tekaphor's comment that "CFS increases the changes of acquiring strange tolerances", that is really just speculation. People think that eating or drinking certain things makes their illness worse, but there is no proof. And water is highly unlikely to have that effect. Sophia was wrong about other things making her illness worse (read the Wilson article and you'll see), so this could be another example. I'm not suggesting we alter this wikipedia article, I'm just pointing out the obvious because you don't seem to see it (or don't want to). But it is very important in understanding how this case applies to CFS in general. --Sciencewatcher 14:32, 7 September 2007 (UTC)

Actually there's evidence of increased incidence of gluten intolerance in ME, and a recent review study into illness in general - it was on bbc site but can't find it - found that many illnesses' symptoms could be helped by excluding problem foods. 62.69.36.100 (talk) 08:37, 21 September 2008 (UTC)

Sciencewatcher, to me this hasn’t been a discussion about actual water intolerance, but about how CFS symptoms affected her behaviour. I should have made it clearer that I differentiate between the experience of sensitivities in CFS patients and the underlying processes (the latter being largely unknown), with the point being that the phenomenon is common in CFS. I’m sure you’re aware that a statistically large proportion of patients appear to experience hypersensitivities to one or more foods/alcohol/medications etc and don't necessarily all have "MCS". Regardless of the "reality" behind these experiences, they should be considered when analysing their actions, especially in severe cases like Sophia’s where she was under extreme circumstances. Additionally, CFS increases psychiatric distress, so maybe this played a role too. Actual water intolerance does indeed sound unlikely, but the coroner’s wording was "arising as a result of CFS"; this implies to me an indirect complication rather than a direct cause. I’m guessing that if a compassionate doctor examined Sophia at home they would have put her on a saline drip. - Tekaphor 02:13, 10 September 2007 (UTC)

Yes, this was a very sad case, and the death almost certainly could have been prevented had Sophia had proper medical care. Unfortunately, as we can see from the article, the family had some very bad experiences with the medical profession and it is likely this that is the main cause of the death. --Sciencewatcher 00:24, 11 September 2007 (UTC)

I have come late to this discussion, but think Tekaphor is on the right tram, CFS is often associated with chemical sensitivity and MCS and such chemicals can cross the blood brain barrier, a possible cause of 'headache'. Without wanting to state the obvious i doubt that the H2O in her local water was the problem. I know of public hospitals that put such patients CFS/MCS on de-ionised and de-mineralised water during diagnosis/treatment. Testing has found such patients can be highly sensitive to chemicals in water, such as chlorine (considered a social cost in water treatment terms) fluoride, water polishing chemicals, pesticides, etc. Though not a strict allergy her mother was correct in describing it as intolerance (ie non IGE mediated) That some in the medical professions are in denial (because underlying processes are not fully deliniated) and still try to sweep such findings under the carpet, may not have helped either. If it was better communicated it may have helped, so might a supply of 'clean water' Portable de-ioniser columns are readily available from water treatment firms, and CFS patients do use them. I agree with Sciencewatcher's conclusion for these reasons. Jagra 01:07, 13 September 2007 (UTC)

There is no evidence that chlorine in water causes CFS or that CFS patients are sensitive to it. And research has shown that "MCS" patients are not in fact sensitive to any particular chemicals. Have a look at the wikipedia page for MCS and read the research. As usual, Jagra, you are entering the territory of speculation and pseudoscience. --Sciencewatcher 18:41, 14 September 2007 (UTC)

I'm not an expert in MCS but believe the evidence is conflicting, and biological explanations for MCS have been published. 62.69.36.100 (talk) 08:37, 21 September 2008 (UTC)

Sciencewatcher, Sure given any hypothesis as to what caused her CFS is untestable technically it might be pseudoscience, but I find such speculation simply pointless. On the other hand although we do not know the girl’s chemical sensitivities, her mother apparently said she was intolerant to water, and I accept that, unlike others it seems. Also I pointed out that there are a myriad of chemicals in treated drinking water PMID 17363035, even endocrine disrupting chemicals, PMID 16190224 As to chlorine, apart from its oxidising properties, even in the digestive tract, some forms have been found to decrease thyroxine levels in mammals. PMID 3816729. Disinfection By-products caused by chlorine and other agents in drinking water have been found carcinogenic, mutagenic and cytotoxic in animal and invitro studies. PMID 15327842 PMID 17180964 I notice from the MCS article that bleach is top of the list for triggers and WP Bleach says it is commonly used in water treatment. As I said there is a known social cost, only acceptable whilst there are no better alternatives, or whilst the ‘cost’ is not greater than the benefit. Chlorine’s day may be fast drawing to a close. There is any number of possibilities as to why this girl may have been intolerant of water, and beyond that speculation is pointless. Jagra 11:12, 17 September 2007 (UTC).

Implications

Most of the implications section was removed by User:WLU. While the section could be written better, I oppose this removal. To understand the implications of this case, it is essential to know that (a) similar results were already found long ago and (b) inquests like this one are nonetheless almost unique. I.e., one did not stumble on one case of inflammation by coincidence after 10,000 failed tries. One simply never looks. Guido den Broeder (talk, visit) 20:16, 11 September 2008 (UTC)

I'm not happy at the drastic removal either. Wasn't all or most of it referenced? 62.69.36.100 (talk) 08:37, 21 September 2008 (UTC)

The same thing most likely would be found in other patients, as herpes infections are common in CFS patients, as the article already says. I don't see how this proves anything. --Sciencewatcher (talk) 20:44, 11 September 2008 (UTC)

Inflammation is not the same as infection. Guido den Broeder (talk, visit) 21:56, 11 September 2008 (UTC)

Read the article. The inflammation was typical of a herpes infection. --Sciencewatcher (talk) 22:06, 11 September 2008 (UTC)

As repeated above rhe report also say the findings are consistent with what was known as ME, and we know ME is likely caused by some infection, whether herpes, enterovirus or something else. 62.69.36.100 (talk)

Finished the re-write. I based it on what the sources say, no syntheses, original research or coatracking. I re-read the previous version and it was a total coatrack and totally inappropriate. Barring a reliable source stating that Mirza's condition was due to herpes inflammation, there's no need or reason to include it. It is OR to engage in the effort to link Mirza's condition to any other condition or even death related to CFS. I also removed the tag regards the rarity of such inquests. If such inquests are indeed rare, provide a citation stating that what happened to Mirza was a rarity. I don't care if it's true or not, I just care that it's got a reliable source. WLU (t) (c) ^{(rules - simple rules)} 23:04, 11 September 2008 (UTC)

Usually, very little is written about things that are not. I will see what I can find, but it may take some time. What I would like to know at this point is whether an uninvolved reader would get the wrong impression from the current text that such inquests are common and the finding is merely a lucky hit. Guido den Broeder (talk, visit) 23:38, 11 September 2008 (UTC)

So you have no sources to justify a change. Since there is no deadline and wikipedia is about verifiability, not truth, the page will not be changed. There can be no wrong impression based no the current sources, unless they are improperly summarized. WLU (t) (c) ^{(rules - simple rules)} 01:11, 12 September 2008 (UTC)

Sure there can. Tone, orde, and things left out, also influence the reader's impression. But yes, I am perfectly aware of Wikipedia's shortcomings. That makes Wikipedia wrong, not me. Guido den Broeder (talk, visit) 01:24, 12 September 2008 (UTC)

It reads tendentiously to me, with comments like "The inquest's report has been promoted by the ME Association as a breakthrough" (It was maybe reported on their web site and magazine but so are lots of ME-related news, I don't see how that's a "promotion"). Promotion suggests a motive but unless it can be proved it's probably best not to imply motives.

I disagree that supplying the related information made the article a "coatrack". It's more likely subtle, unintentional bias is derived from the current version. For example, the line "...the magazine later acknowledged that other deaths had been directly attributed to CFS in the United States and Australia." will very easily be taken to mean that there have been no recorded deaths due to ME in the UK, since the previous material stating such was removed. 62.69.36.100 (talk) 08:37, 21 September 2008 (UTC)

ME/CFS

WLU, please. You cannot possibly maintain that deaths were attributed to CFS in 1956, or that an advocacy group that has ME in its name is not an ME advocacy group. And don't import disputes from other pages. Guido den Broeder (talk, visit) 12:38, 15 September 2008 (UTC)

I'm using CFS and ME synonymously, as most researchers seem to (see here). Your continuous insertion of ME instead of CFS is somewhat absurd, particularly considering the sources state this explicitly. Let's look:

• "CFS^{[not in citation given]} advocates said that the verdict was proof that the condition is neurological.[2]

The citation for this is the BBC. The article contains the words "The New Scientist reported that it is the first time that CFS, also known as ME, has been given as an official cause of death in the UK."

• "(ME, a synonym for CFS^{[dubious – discuss]} used in the United Kingdom)"

The citation to this is from InvestinMe, citing the Brighton inquest. The page states "Two pathologists could not agree which name to use - CFS, ME or ME/CFS. In the end it was stated that CFS is a modern word for ME. This is why CFS was used on the death certificate."

• "Fatalities attributed to CFS^{[not in citation given]} can be traced back to at least 1956"

Reference 4 is Carruthers, BM (2003). "Myalgic encephalomyalitis/chronic fatigue syndrome: Clinical working definition, diagnstic and treatment protocols". Journal of Chronic Fatigue Syndrome. 11 (1): 7–36. doi:10.1300/J092v11n01_02. {{cite journal}}: Unknown parameter |coauthors= ignored (|author= suggested) (help). It contains the words "Recent years have brought growing recognition of the need for clinical criteria for myalgic encephalomyelitis (ME), which is also called chronic fatigue syndrome (CFS)."

So, you are placing tags on terms that are not disputed by the sources, but are actually used by the sources. In other words, your tags directly contradict the sources that are used to justify the statements. It's not like I'm making this up, I'm using verbatim quotes that completely refute your points. Would you like to remove the tags now? WLU (t) (c) ^{(rules - simple rules)} 17:56, 15 September 2008 (UTC)

Based on this, I've removed all tags on sentences and the top of the page, and added quotes so readers can verify for themselves that CFS and ME are in fact considered the same thing by the sources used. Please do not tag again or cite me for 3RR violation, that would seem disruptive to prove a point. In all three sources used, ME and CFS are clearly considered synonyms, so it is appropriate to use the sole descriptor that wikipedia uses. The only source I can't view is Wallis, which probably doesn't use ME or CFS and is unlinked, and an unpublished MD thesis, thus potentially an unreliable source. I'm inclined to remove it. WLU (t) (c) ^{(rules - simple rules)} 18:09, 15 September 2008 (UTC)

1. The article says that advocates claimed something, not the New Scientist, so you should look at who the advocates actually were and what they actually said: "Groups such as Invest in ME and the ME Association say the coroner's ruling shows that CFS/ME is a neurological condition". I.e, ME advocates, not CFS advocates. They would find being called CFS advocates a grave insult, and barely tolerate CFS/ME.
2. A statement is not a fact. Many statements were made in response to this statement, saying that writing CFS on the certificate was wrong.
3. You seem not to understand the point. It is not possible that an author attributed a death to CFS in the 1950's, 30 years before CFS was invented. Guido den Broeder (talk, visit) 18:12, 15 September 2008 (UTC)

Your points only have merit if CFS and ME are considered different things. They do not seem to be, and the sources on this page state it explicitly (i.e. ME and CFS are the same). Even in the quote you provide, ME and CFS are used as an equivalent (i.e. a slashed term rather than one or the other). Those advocates may be gravely offended, but their opinion is not relevant. The sources are. The sources verify that the two terms are used synonymously and on wikipedia CFS is what is used to describe them both. I don't see any of the "many statements that CFS on the certificate was wrong". I do see statements saying they're the same thing. As for the 30 years in the past comment, we don't have a different article for every synonym for CFS that exists. We have one - chronic fatigue syndrome, and the discussion of the naming issues - alternative names for chronic fatigue syndrome. CFS wasn't invented, numerous other conditions were renamed. WLU (t) (c) ^{(rules - simple rules)} 18:51, 15 September 2008 (UTC)

My comments stand. Guido den Broeder (talk, visit) 19:19, 15 September 2008 (UTC)

They look pretty refuted actually. Would you like a WP:3O or WP:RFC on this? WLU (t) (c) ^{(rules - simple rules)} 19:38, 15 September 2008 (UTC)

Guido has an interesting point. Consider the following hypothetical situation: Let's say someone diagnosed with "delusional parasitosis" dies and the autopsy reveals suspicious fibers which suggest the patient wasn't delusional afterall, which attracts the interest of people who claim to have Morgellons syndrome rather than delusional parasitosis. It would be misleading to then state in the Wikipedia article "Delusional parasitosis advocates claim that this demonstrates that they have a real physiological illness." They are not "advocating" delusional parasitosis but Morgellons syndrome.

Some advocates deny that CFS is the same as ME, and they support the literal interpretation of "myalgic encephalomyelitis" (muscle pain, inflammation of the brain and spinal cord), which some critics think is inaccurate (or as Wessely puts it, a "belief"). From the perspective that CFS is synonymous with ME, they can be viewed as "CFS advocates"; however this is misrepresenting their advocacy, some of whom may endorse the term CFS in some way but there are others who don't. Sophia's autopsy showed dorsal root ganglionitis.

I just noticed that Guido made an edit which roughly reflects what I wanted to suggest anyway: The article needs to be more specific about the advocacy and find the relevant sources, keeping in mind there may also be advocate groups who both accept CFS and believe the autopsy supports the existence of inflammation regarded as common in ME/CFS patients. Disclaimer: I'm not involved with the "Morgellons syndrome" and "delusional parasitosis" articles and I'm not making any statements about them; neither am I comparing these with ME/CFS or accusing anyone of being delusional.

_Tekaphor (TALK) 13:26, 16 September 2008 (UTC)

Tekaphor - on wikipedia the terms ME and CFS are considered synonymous for the same condition, and we use the name CFS because it seems to have the greatest prominence. There are many sources that state that the two are considered the same thing, and several that say they are the same thing but ME is preferred in the UK. Despite that, on wikipedia we use CFS to avoid content and pov forks of pages. I have no objections to a page on myalgic encephalomyelitis existing, but it must be demonstrated in medically reliable sources that ME is considered something other than CFS. From the sources I have seen, this is not the case. We must always use sources to report verifiability, not truth and avoid engaging in original research. Since the sources, all of them discussing Mirza specifically, use ME and CFS synonymously and in fact state "ME is a synonym for CFS", rather than mixing the two, a single term with the qualification that they are the same thing seems the appropriate response. It should be prominently noted, particularly in this page, that ME is another term for CFS, but ultimately CFS is what should be used throughout. Until sources equivocally state that ME is different from CFS, and it is determined that they represent a majority opinion or failing that a substantial minority, we use one term, CFS, with the qualification that ME also exists. For us to choose a term that we prefer despite the sources themselves stating the terms are equivalent is original research, which as I've said before is not allowed. WP:OR is a policy, meaning we do not have wiggle room. To use reasoning by analogy might be acceptable if the sources were unclear, but they are unequivocally not unclear. My apologies for the emphasis, but Guido gives the impression that there's wiggle room and there really isn't. Also, since I haven't seen any really reliable sources that discuss the ME/CFS naming dispute, CFS is the predmoninant name. WLU (t) (c) ^{(rules - simple rules)} 14:12, 16 September 2008 (UTC)

Thanks, Tekaphor. WLU, please stop writing that people attributed deaths to CFS in 1956, which is a similar issue. People didn't even know about CFS until more than 30 years later. Guido den Broeder (talk, visit) 14:15, 16 September 2008 (UTC)

Are ME and CFS considered by the majority of scholars to be the same thing? WLU (t) (c) ^{(rules - simple rules)} 14:58, 16 September 2008 (UTC)

I believe that is discussed somewhere else already. In this article we happen to cite some specific scholars and advocates. Guido den Broeder (talk, visit) 15:07, 16 September 2008 (UTC)

I wasn't really commenting specifically on the naming issue, but the presentation of advocate groups. I don't think these are the same issue. If an organisation clearly disputes CFS as a term for ME, it doesn't seem accuracte to call them "CFS advocates". The current text "According to the BBC, advocacy groups such as the ME Association saw the inquest's verdict as proof that Mirza's condition is neurological rather than psychological." is good because it doesn't even get into the naming issue, plus it's a secondary source. - Tekaphor (TALK) 15:48, 16 September 2008 (UTC)

Thanks. Corrected "is neurological" to "was neurological" because of the whole past-tense thing. WLU (t) (c) ^{(rules - simple rules)} 16:18, 16 September 2008 (UTC)

ME and CFS are contrasting concepts

The Carruthers "Canadian" definition (CD) has very little international support and was published in a poorly esteemed and now defunct journal (J CFS). Although a huge improvement on the CDC definition it has not replaced it, rather the CDC have ignored the Canadian definition and continued to run with an ever increasingly broad and psychosocial definition, helmed by Dr William Reeves, who has himself said that the historical outbreaks of ME are nothing to do with CFS (See Hyde). The unwieldy compound term used by the CD implies that the terms are equivalent and interchangeable and it's that that is "absurd", not the choice of using ME when talking about ME. If not for the unreal elevation of vague and subjective "fatigue" to a primary feature, the CD would actually be entirely an ME definition, pure and simple. They kept CFS simply to ass-kiss the international fatigue obsessives and (allegedly) US insurance claims. The only other main authority that implies equivalency is the WHO but everyone ignores them (especially the IoP in the UK!) as they're generally only involved in statistics.

There are at least six CFS definitions and the controversial, legally challenged UK NICE guidelines have introduced yet another, almost as bad as the Oxford. So the particular argument that one unpopular definition among many more popular including "CFS" in the name means the terms are equivalent falls flat. The hard fact is, as WP's own CFS article and backpage arguments surely display, CFS can be anything to anyone, although all the most respected sources insist that physical signs and pathological findings are diagnostic exlusions.

And what do the people who invented CFS have to say about it -- the CDC, arguably one of the world's most respected medical authorities?

"Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that is not fully supported in the medical literature. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."[3]

From the horse's mouth, so to speak.

I recommend reading Dr Hyde's PDF booklet on the differences between ME and CFS, available on his Nightingale site and various other sites. Dr Hyde was one of the three respected ME specialists who walked out of the CDC silly name committee when he saw the flagrant farce they were making of the Incline Village outbreak in the 1980s. 62.69.36.100 (talk) 08:37, 21 September 2008 (UTC)

This page is to improve the Sophia Mirza mainpage, not to discuss the differences between ME and CFS, if there are any. That particular bit of text from the CDC has been discussed to death at the talk:chronic fatigue syndrome page, and ultimately it was decided to keep the terms together as a synonym due to undue weight and sourcing concerns. WLU (t) (c) ^{(rules - simple rules)} 11:59, 21 September 2008 (UTC)

Citecheck tag

The cite check tag is still at the top of the page. What citations need to be checked? What interpretations are incorrect? What text is not verified? What is required to remove the tag? WLU (t) (c) ^{(rules - simple rules)} 20:03, 15 September 2008 (UTC)

As far as I am concerned, the tag can be removed, but It's better to let other, uninvolved editors comment first probably. The tag at the top is certainly better than the overtagged version we had (with even tags inside quotes...). Fram (talk) 07:26, 16 September 2008 (UTC)

@WLU: On your request, and following the outcome of your 3RR violation, I put tags in the text to indicate what needs changing. Unfortunately, Fram has removed them, while at the same time threatening me in case I would follow policy and put them back. This makes it impossible to efficiently discuss the problems in detail. Instead, I will therefore go ahead and improve the text, and will remove the main tag myself when I'm satisfied. Guido den Broeder (talk, visit) 08:43, 16 September 2008 (UTC)

How is putting tags in literal quotes in references "following policy"? Anyway, actually improving the text is obviously welcome, but when you can reasonably doubt that many editors here will agree with your changes, it is better to give suggestions here. It is fairly easy to quote here a line or section you have problems with, and suggest better alternatives. How would you discuss this otherwise? By pointing to the fifth "fact" tag in the article? I don't believe I have made anything impossible. As for WLUs 3RR report: you filed it, but the outcome was "no action taken", and the reviewer (mangojuice) concluded that WLU was at 3RR, not beyond. Please respect the result of reports you have initiated, and don't call it a 3RR violation anymore. Fram (talk) 09:27, 16 September 2008 (UTC)

Mastcell counted 4RR, Mangojuice counted 4 blocks. I don't think the guideline works that way, but 4RR or 4 blocks is a clear indication editwarring. The outcome was only 'no action taken' because we had already reached an agreement. Normally WLU would have been blocked but I'm not looking to block other editors, only to stop them being disruptive. Now can you stop kicking the person who is following all the guidelines and policies? Guido den Broeder (talk, visit) 09:34, 16 September 2008 (UTC)

I'm not kicking you, and you are not "following all the guidelines and policies". For anyone still interested, the 3RR report was at Wikipedia:Administrators' noticeboard/3RR#WLU reported by Guido den Broeder (Result: No action). You say that "I don't think the guideline workss that way", which only shows that you don't understand the guideline. Mangojuice clearly states "WLU has made 4 blocks of consecutive edits in the last 24 hours, one of which (the earliest) was [86], which was not a revert as far as I can tell." 4 blocks, one not a revert, is three reverts. You have made three reverts as well. Both of you were edit warring. Even without the gesture of readding the top tag, WLU would, contrary to your statement, not have been blocked. Furthermore, Mangojuice considered the behaviour of both sides disruptive. And I don't see WLU reaching an agreement with you, he said that he would readd the top tag, and you asked for "all the tags, please". WLU did not reply to this, but since he didn't add all the tags, it looks like there was no such agreement. Fram (talk) 09:44, 16 September 2008 (UTC)

Let's stay on-topic, shall we? And again: please keep it civil. Guido den Broeder (talk, visit) 09:55, 16 September 2008 (UTC)

Where in this post have I been uncivil? Fram (talk) 10:02, 16 September 2008 (UTC)

I believe I have solved the main citing issues now in a neutral manner, so I have removed the citecheck tag. Please edit more carefully in the future. Guido den Broeder (talk, visit) 10:28, 16 September 2008 (UTC)

"Please edit more carefully in the future"? Let's see; comparison of your tags with the actual changes: "dubious" tag unchanged, "fact" tag unchanged, "failed verification" changed but not fundamentally, "failed verification" tag essentially unchanged, "fact" tag unchanged, "dubious" tag fundamentally unchanged, "failed verification" tag fundamentally unchanged, and "dubious" tag unchanged. That's half the tags without any change to the actual tagged text, and the other half where you have done minor changes without changing the original meaning in any essential way. Fram (talk) 12:01, 16 September 2008 (UTC)

Well, then I have done an excellent job resolving the dispute: in my eyes fundamental issues were solved, and in your eyes nothing much has changed. We can't have it any better than that. Guido den Broeder (talk, visit) 12:09, 16 September 2008 (UTC)

You have created a dispute, prolonged a dispute by edit warring, patronized other editors, all without any grounds for the dispute. You seem to have a quite peculiar definition for "excellent job". How have you "solved fundamental issues" on the four tags where actually nothing at all was changed? Fram (talk) 12:15, 16 September 2008 (UTC)

I did not create the dispute, thanks. It was the consequence of WLU's editing.

By improving the text in some places, another phrase came to sound more neutral. That often happens when working on pov issues. Guido den Broeder (talk, visit) 12:33, 16 September 2008 (UTC)

You tagged different sentences or words as "failed verification". You did not change the sentences, nor did you change the references, but the tags are no longer needed. This has nothing to do with neutrality or pov. You can hardly be surprised that people have serious problems with your tags if most of them were unneeded (since nothing changed) and all of them were apparently incorrect anyway (since they indicated different problems than the ones you actually had with the article). It is obvious to me that this disputed was created by you and prolonged by you both, and that removal of these incorrect tags was the only good solution. Fram (talk) 12:50, 16 September 2008 (UTC)

Take your lies and personal attacks elsewhere. This is the article's talk page.

[4] Diff between tagged version and remedied version, all cite errors corrected. Guido den Broeder (talk, visit) 12:59, 16 September 2008 (UTC)

After you twice accused me of incivility without backing it up, you now accuse me of a personal attack in the above post. The "diff" you give is the same one as the one I gave above: which "cite errors" were corrected? How did "CFS, known as myalgic encephalomyelitis" miraculously change in "CFS, known as myalgic encephalomyelitis"? How did the "Fatalities attributed to CFS" suddenly get verified as "Fatalities have been attributed to CFS or ME" with the exact same source? The source that said "myalgic encephalomyelitis (ME), which is also called chronic fatigue syndrome (CFS)", so the "or" between the two terms indicates two synonyms, not two different diseases (for this source). You have tagged the article with 8 problem tags (plus a general one), which led to an edit war. Now it turns out that the problems you had with the statements (neutrality and pov) had nothing to do with the actual tags (factuality), and that even in half the cases, nothing was changed at all. This is a problem with the article, so the talk page is the correct location. Besides, I had this discussion about the tags on your talk page, and you sent me over here[5] and removed it there[6]. Fram (talk) 13:21, 16 September 2008 (UTC)

The tags are Guido's pointy way of objecting to the use of CFS as a synonym for ME. I think it's pretty clear and any arguments otherwise are system gaming. It has not been demonstrated that ME and CFS are considered different things by the scholarly majority. Quite the contrary, there are a variety of recent (2008) references in scientific journals that refute that point. Guido continually pointing to the civility of others is similarly gaming. ME and CFS are the same thing, one editor altering them to suit his preference against consensus is tendentious and ownership. WLU (t) (c) ^{(rules - simple rules)} 14:15, 16 September 2008 (UTC)

That is all very interesting, but while you may think that ME and CFS are the same, the advocates mentioned here do not, so you cannot write in this article that they do. Guido den Broeder (talk, visit) 14:30, 16 September 2008 (UTC)

This nomenclature war is disruptive and neither of you are right. I propose that whenever a statement is backed up by a source we use the nomenclature in that source. So if an article talking about "CFS/ME" says something, we call it "CFS/ME" in that statement. In another place, if another source says just CFS, we say just CFS, and if a source says ME without implying that they believe CFS and ME are the same, we use ME. WLU, your tendentious claim that CFS and ME are the same is disputed by reputable sources, so drop it. And Guido, if those tags are only about nomenclature I think they ought to be removed: this is a tempest in a teapot and those tags make it look like someone thinks that the information is inaccurate or mistaken, but it's over an extremely minor technical point. People have gone to Arbcom over naming conventions before, and that's the way this is headed if you don't stop warring over this. Mangojuice^talk 14:38, 16 September 2008 (UTC)

The guideline on citations is clear: do not misquote. So if we have two sources where one uses CFS and another uses ME, we should write 'CFS or ME', and not 'CFS', or so it seems to me. Unfortunately, because WLU keeps reverting, I can't do anything else but tag. Guido den Broeder (talk, visit) 14:47, 16 September 2008 (UTC)

The problem is that from what I've seen, there are several reliable sources that explicitly state ME and CFS are synonyms, but none that object to it in the same clear and unambiguous fashion. I've seen no sources that state "chronic fatigue syndrome is not the same thing as myalgic encephalomyelitis". If you look at the discussion here, there's 10 quotes from medical journals to support this, all from 2008. Even the sources on this page explicitly state that ME and CFS are the same thing (above). The articles don't talk about ME/CFS, they talk about CFS, also known as ME. New Scientist uses CFS specifically throughout. Carruthers et al. uses the terms interchangeably and explicitly says "Throughout this paper, “myalgic encephalomyelitis” and “chronic fatigue syndrome” are used interchangeably and this illness is referred to as “ME/CFS.”" - there is no preference (and based on the abstract the article doesn't seem to discuss Mirza). The inquest report used CFS over ME. The BBC uses both, as slashed terms and independently, but describes ME as the historical term and describes Mirza as suffering "...with CFS for six years..." The sources actually all use CFS when it is a standalone term and referring to the current consensus. Wikipedia should use the term that is preferred by the scholarly majority, and this is quite clearly CFS rather than ME; though they prominently refer to both as synonyms, they use CFS in the body texts and CFS is the preferred term. Using CFS/ME throughout when the page is chronic fatigue syndrome and not chronic fatigue syndrome/myalgic encephalomyelitis seems quite inappropriate and confusing to unfamiliar readers. It's not like this is just my opinion, I was agnostic on the subject but found the sources quite explicit. I have no problem with a documentation that they are different, if a source can be found. WLU (t) (c) ^{(rules - simple rules)} 15:22, 16 September 2008 (UTC)

Let's discuss that elsewhere, please. What matters here is what the advocacy groups advocate for and what the deaths were attributed to in 1956. Guido den Broeder (talk, visit) 15:26, 16 September 2008 (UTC)

Which according to Carruthers, could be either ME or CFS because as far as they are concerned, it doesn't matter which is used as the two are the same thing. The advocacy groups were happy because the inquest supported a physical basis to the condition, but the actual source that discusses the advocacy groups uses ME/CFS, but states within itself that ME is a historical name. Also, with this edit, I eliminate the last dying dregs of ambiguity by using "Mirza's condition" rather than specifying. Now there is no dispute for that sentence. The only question now is "does Carruthers state that people died of ME or CFS in '56". If it does, the tag can be removed since Carruthers specifically states in the abstract that the two terms are interchangeable. Wallis should be removed as unaccessible, more than 50 years old and not particularly reliable since it's a thesis that does not seem to have been published in a peer-reviewed journal. WLU (t) (c) ^{(rules - simple rules)} 15:34, 16 September 2008 (UTC)

Well, there's this source that explicitly says that ME and CFS have different case definitions: [7]. And you know about it, as you've commented on that source before. Furthermore, that source is at a meta level one above all of your examples: certain researchers use one term or another or use them interchangeably, but they aren't writing about terminology, they're just using a term in describing their own research. As far as I can tell here, WLU, you are the one pushing something. When referring to specific claims of sources, there is no harm in simply quoting the terminology they use. Why not do it that way? Mangojuice^talk 17:07, 16 September 2008 (UTC)

Acording to the guideline, a thesis is perfectly reliable. It's not reviewed by peers, but by betters! Wallis is quoted in Ramsay's book, which is available. Guido den Broeder (talk, visit) 17:51, 16 September 2008 (UTC)

The problem is that using that one source, which is contradicted by many others places undue weight on the idea that there is a difference and is promoted by Guido because it is his opinion (and therefore using wikipedia as a soapbox and original research), and another example of gaming the system rather than the reporting of the scholarly majority as we are supposed to do. I don't have a problem with the page right now bar the tags at the top and in the Death paragraph. The second is particularly bothersome considering the Carruthers citation states that the two terms are interchangeable (i.e. assuming that it states people died in 1956 from what is now seen as CFS, it is in the citation given). Also, irrespective of the interchangeability of terms, why should any article switch between two terms throughout? We do not alternate first and last names, English or non-English translations of terms, ENGVARs, medical synonyms, the United Kingdom versus Britain, Holland and The Netherlands, strawberry versus Fragaria ananassa, or any other set of synonyms. We don't use synonyms in wikilinks either. Correcting links like [[chronic fatigue syndrome|myalgic encephalomyelitis]], which I have had to do, is nonsensical and again suggests that ME is the "right" term and chronic fatigue syndrome is some sort of embarassing oversight on our part. When it is important, when the division between CFS and ME is important in substance using ME may be preferred. But particularly given the sources themselves prefer CFS over ME, it really seems an undue weight and soapbox issue.

But I guess it's not that bad so long as it's qualified - see here. Is this acceptable to everyone? WLU (t) (c) ^{(rules - simple rules)} 18:20, 16 September 2008 (UTC)

It's not perfect, but I will accept it. The only thing I'm soapboxing here is accurate citing. Guido den Broeder (talk, visit) 18:40, 16 September 2008 (UTC)

Cause of death nonsensical:

"An inquest was conducted to determine her cause of death, with the coroner ultimately recording it as acute renal failure caused by a failure to produce urine resulting in dehydration, caused by CFS."

As a layman, may I suggest the following: a) this sentence is too long; b) multiple clauses lead to ambiguity in meaning; c) the coroner's statement should be quoted verbatim; d) a layman may fail to understand how failure to produce urine results in dehydration, when urine production requires water; e) the controversy recorded on the discussion page should be summarized in the article, since how can laymen understand the facts, when experts like you cannot even agree? f) the above quoted sentence should be replaced by: "An inquest was conducted to determine her cause of death. The coroner ultimately recorded the cause as "Acute renal failure caused by dehydration, caused by CFS." [Then explain, if possible or necessary, how failure to produce urine interacts with this cause of death and CFS. g) state what the points of agreement are, then explain the reasons for the points of disagreement SalineBrain (talk) 12:09, 8 December 2008 (UTC)

Actually, the death certificate doesn't mention "failure to produce urine" at all. The cause of the dehydration was not actually a failure to produce urine, it was because Sophia had restricted her water intake because she believed she was intolerant/allergic to water. Currently I don't think the article mentions this but it should probably go in because it is highly relevant. --sciencewatcher (talk) 15:56, 8 December 2008 (UTC)

On the contrary, that's your theory and not quite what the pathologists said. They did say that the renal failure was due to dehydration, they didn't theorise on whether water intake was the cause of this or not, nor did they do as you do and insist the problems with drinking were due to her beliefs as opposed to her experience when drinking. You're doing "original research" by making such deducements. — Preceding unsigned comment added by Vespadrun (talk • contribs) 10:46, 22 July 2012 (UTC)

Are you saying it's possible to be allergic to water? And low-level electromagnetic fields from household devices? --sciencewatcher (talk) 15:25, 22 July 2012 (UTC)

Death certificate: "1 (a) acute aneuric renal fatigue due to dehydration, (b) chronic fatigue syndrome; 2 previous meningitis, high body mass index, dorsal root ganglionitis, hepatic steatosis. Verdict: she died as a result of acute renal failure arising from the effects of chronic fatigue syndrome." [8]

Mirza's mother: "In September, this monster of a disease took another turn. Sophia had become allergic to any and all types of food. Physically, she could eat, but the reactions were so severe, e.g. knives stabbing into her head, that this precluded her body being able to accept the food. Five weeks later, any sort of water or liquid had similar devastating effects on her; her glands would balloon-up and she felt as if the circulation in her legs was being cut off. She could only bear about 4 fluid ounces of water a day, which was used to moisten her mouth. At the end of October she got an ear infection. Her head and neck swelled-up like a football, she was in agonizing pain." [9]

So she died from reduced water intake. As much as some people may want to blame all this on her irrational beliefs which had magical powers to cause horrendous pain and glandular swelling, it sounds like the experiences preceded the "beliefs". Use of the word "allergic" does not need to be taken literally, it was used to describe phenomenon of intolerance, not a confirmed immune-meditated mechanism.

An allergy to pure water would sound highly unlikely to most people, but I note that aquagenic urticaria (extremely rare skin reaction to water) is in the WHO ICM-10 and PubMed database. I don't know enough about it to state anything with confidence, but I guess it may be substances in the water which is causing the problem rather than pure H2O.

In Mirza's case, which is not the same, who knows what actually happened. She may have indeed developed extreme sensitivity to food and (substances in) water, but Mirza was also severely affected, even the slightest activity can worsen symptoms in such a state. Eating and drinking requires chewing/swallowing, stomach activity etc, and shift in blood flow, etc. Just speculating here, but dorsal root ganglionitis sounds like a major potential factor to me, as the DRG acts as a gateway for sensory inputs. The sensation of "knives stabbing into her head" sounds like a compelling reason to avoid doing something regardless of cause and beliefs.

Medical incompetence clearly played a large overall role. Being sectioned then maltreated while severely affected had triggered a persistent decline. Her horrible experiences meant that when she worsened, she did not want to see another doctor to be showered with further incompetence. As Mirza also earlier reported electromagnetic sensitivity, I suspect Sciencewatcher mentioned it to either bait Vespadrun into being quackbusted or to cast doubt on Mirza's beliefs regarding her food and water intolerance. - Tekaphor (TALK) 08:08, 25 July 2012 (UTC)

I had a quick read of the earlier conversion about this issue. An anonymous IP made an interesting point that there is no confirmed connection between the dehydration and Mirza's refusal to consume more water due to the extreme adverse reaction of doing so. However, although the estimated daily requirement of fluids varies, all the estimates based on the different sources I found on the issue are way higher than 4 fluid ounces (or about half a cup) a day. So it seems highly likely that this reduced intake caused the dehydration. - Tekaphor (TALK) 08:31, 25 July 2012 (UTC)

I think the issue might just be that the coroner didn't know about the reduced fluid intake. One of the investigators said that the dorsal root ganglionitis was consistent with herpes infection as far as I can remember. --sciencewatcher (talk) 16:10, 25 July 2012 (UTC)

Probably. Here is the neuropathology report anyway. [10] The cause of DRG-itis was "not immediately evident". Possibilities raised are herpes zoster, herpes simplex, and paraneoplastic ganglionitis. However, the report also provides caveats for these possibilities, especially the last one. The DRG seems generally vulnerable to herpesviruses (which can lay dormant there), hence the suspected role of the latter, but obviously DRG-itis is not a normal finding, otherwise O'Donovan would not have highlighted it as a possible explanation for Mirza's symptoms. DRG-itis was also found in the autopsy of Lynn Gilderdale: "When her body was examined by a pathologist who specialised in ME, he discovered dorsal root ganglionitis — infected nerve roots — and nodules of Nageotte, which are little tombs of dead cells, in her spinal cord. These would have caused her terrible pain and sensory nerve damage." [11]

From the ICC-ME in 2011: "Neuroinflammation of the dorsal root ganglia, gatekeepers of peripheral sensory information travelling to the brain, has been observed in spinal autopsies (Chaudhuri A. Royal Society of Medicine Meeting 2009)." [12] I guess this is the same or similar data presented in Journal of the Neurological Sciences Vol. 285 Supplement 1, Pages S60-S61 (October 2009) where the authors speculate that "Based on the histopathological changes observed in three cases, we propose that inflammation of the dorsal root ganglia may play a key role in the pathogenesis of post-infectious chronic fatigue. Abnormal processing of sensory information secondary to dorsal root ganglionitis could potentially contribute to fatigue due to higher perceived effort and pain because of reduced sensory threshold." Similarly, other researchers have been speculating about the role of the DRG in CFS [13] possibly due to herpesvirus infection of the DRG [14].

_Tekaphor (TALK) 02:17, 26 July 2012 (UTC)