Talk:Sophia Mirza

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[edit] 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)

[edit] 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)

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)

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)

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)

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)

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)

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)

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).