Wonko
Senior Member
- Messages
- 1,467
- Location
- The other side.
*********Moderator:Text removed due to personal attacks in the quoted post. This post deleted as was deemed a redundant rebuttal towards a deleted post.
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Mikowitz accused of manipulating XMRV paper
- Thread starter Valentijn
- Start date
Angela Kennedy
Senior Member
- Messages
- 1,026
- Location
- Essex, UK
**********Moderation: Text removed as was deemed a redundant rebuttal to a post no longer visible.
Wonko
Senior Member
- Messages
- 1,467
- Location
- The other side.
********** Moderation: text removed, redundant rebuttal towards deleted post.
********** Moderation: text removed.
Some of us have been following the science of retroviral involvement in ME for over 20 years. We would like to see the research continue and the questions answered. That's a valid point of view.
If you have some arguments for why this should not continue please present them here.
Some of us have been following the science of retroviral involvement in ME for over 20 years. We would like to see the research continue and the questions answered. That's a valid point of view.
If you have some arguments for why this should not continue please present them here.
Barb,
There have been enough outbreaks for ME to be regarded as an epidemic disease. That is until CFS was invented.
Plenty of people left from epidemic outbreaks that could be studied.
The virus or agent behind the epidemics may now be passed between families. It needs research ********* Moderation: text removed.
There have been enough outbreaks for ME to be regarded as an epidemic disease. That is until CFS was invented.
Plenty of people left from epidemic outbreaks that could be studied.
The virus or agent behind the epidemics may now be passed between families. It needs research ********* Moderation: text removed.
Wonko
Senior Member
- Messages
- 1,467
- Location
- The other side.
@Moderator
How is asking if somone knows something I dont a personal attack by me on them? This is gettign rediculous!!
And it was just that - I accurately quoted part of Jeffy14's post (the first line) and then asked "do you know something we dont? LOL" - is what I posted!!!
Please inform me of how this is a personal attack.
edit - please note I am not disputing your right to moderate my posts - I am disputing that my post consituted a personal attack on Jeffy14 and would like you to justify why you think it was, because now that no one can see it (my post) and your asserting you had to remove my post because of me making a personal attack...............
edit2 - I'd quite like an explaination please, the original post by Jeffy14 only has a basic text removed on it, other moderated posts dont have removed due to personal attack attached to them. Why have I been singled out as attacking Jeffy14 (as it cant be because the line I quoted from him is abusive as otherwise he would also have personal attack attached)
which bit of my response is a personal attack on Jeffy14? Please explain, on forum.
Moderator reponse: Apologies - an error was made in the explanation that has now been corrected. It is recognized that there was no personal attack on your part. If you have further concerns please take them up privately to avoid further disrupting the thread; thank you.
response to moderator response:
Telling me to make communications private when I have been publicly attacked by the "Phoenix Rising Team" so as not to further disrupt the thread doesnt seem reasonable to me, especially as I'm not the one thats disrupted the last page of posts in this thread.
I was very careful in my original response to him not to break any rules that I was aware of, and then subsequently deleted most of my response in case, despite no individual part being against forum rules as I saw them, the whole could be being seen as demeaning towards Jeffy14. So imagine my surprise when my post was deleted and, despite having taken such care and given it so much consideration, people were being told that my post had been deleted because I had personally attacked Jeffy14.
However, I accept your apology and hope it wont happen again.
Before the Royal Free outbreak, Iceland experienced an outbreak in 1948-9 of ME/CFS in a small town in the north of the island called Akureyri. The incident affected in excess of 1000 people. In a subsequent polio epidemic on the island in 1955, the same town was apparently unaffected. As a result, it has been argued that the virus that 'triggered' the ME/CFS outbreak resulted in a level of immunity to polio (Macintyre, 1998).
ME, among it's many labels, has been called 'atypical polio'. To change the subject slightly.
ME, among it's many labels, has been called 'atypical polio'. To change the subject slightly.
Dear Moderator,
Although I ........ that you do a valuable and necessary task, ......... like to read ....... .......... and the removed comments ........ this impossible.
Were they reported, and if no-one ............, why were they removed?
I dont mind a bit of ............ on here. Now I will never know .........are arguing about.
..........................?
Although I ........ that you do a valuable and necessary task, ......... like to read ....... .......... and the removed comments ........ this impossible.
Were they reported, and if no-one ............, why were they removed?
I dont mind a bit of ............ on here. Now I will never know .........are arguing about.
..........................?
I'm pretty neutral about the subject of XMRV, but someone (who claims to have ME with no PEM or OI and recommends GET as the cure), disparaged the possibility of XMRV in a manner that implied ME has no physical cause in general. At least, that was my impression.
SilverbladeTE
Senior Member
- Messages
- 3,043
- Location
- Somewhere near Glasgow, Scotland
You also have to consider the possibility that maybe there ARE still epidemics, but are deliberately hidden from the Public?
I learned later, that a lot of people in my area came down with ME at the same time I did, from what locals and GPs said.
Was very nasty flu-like bug going around my area that took about 2 months to get over, man, I remember damn near choking on thick, tar-like mucus and being barely able to breath for it, yuck!! (sorry, gross but ye gods it was bad, was worse than the bad Flu of about oh 1991? one that gave me big time bronchitis)
remember, it takes months, often years for folk to get a formal ME diagnosis, making reporting/epidemiology hard since it occured a good while ago
AND since ME got reclassified as "neurotic weaklings", many GPs etc couldn't be bothered with it or patients.
Both of which combine to make reporting of outbreaks *in the general populace*, hard to notice.
I learned later, that a lot of people in my area came down with ME at the same time I did, from what locals and GPs said.
Was very nasty flu-like bug going around my area that took about 2 months to get over, man, I remember damn near choking on thick, tar-like mucus and being barely able to breath for it, yuck!! (sorry, gross but ye gods it was bad, was worse than the bad Flu of about oh 1991? one that gave me big time bronchitis)
remember, it takes months, often years for folk to get a formal ME diagnosis, making reporting/epidemiology hard since it occured a good while ago
AND since ME got reclassified as "neurotic weaklings", many GPs etc couldn't be bothered with it or patients.
Both of which combine to make reporting of outbreaks *in the general populace*, hard to notice.
about Slide 2c
About slide 2c:
In the text it says that 19 of 30 PBMC samples from CFS patients reacted to antibody with IFC.
In contrast, 16 healthy control PBMC cultures tested negative. These results were confirmed by Western blots (Fig 2, B and C)... Samples from five healthy donors exhibited no expression of XMRV proteins (Fig 2C).
From what I read Fig. 2C was originally done to make sure the controls were negative. And the western blots were confirming the IFC. (just fact checking, not a scientist)
Fuller quote (my typing)
To determine whether XMRV proteins were expressed in PBMCs from CFS patients, we developed intracellular flow cytometry (IFC) and Western blot assays, using antibodies (Abs) with novel viral specificities. These antibodies inluded, among others (i) rat monoclonal antibody (mAb) to the spleen focus-forming virus (SFFV) envelope (Env), which reacts with all polytropic and xenotropic MLVs... {...re:more antibodies} All of these Abs detected the human VP62 XMRV strain... IFC of activated lymphocytes revealed that 19 of 30 PBMC samples from CFS patients reacted with the mAb to MLV p30 Gag (Fig 2A)....In contrast, 16 healthy control PBMC cultures tested negative (Fig 2A and S4A). These results were confirmed by Western blots (Fig 2, B and C) using Abs to SFFV env, mouse xenotropic MLV, and MLV p30 Gag. Samples from five healthy donors exhibited no expression of XMRV proteins (Fig 2C).
http://www.sciencemag.org/content/326/5952/585.full available free with password
About slide 2c:
In the text it says that 19 of 30 PBMC samples from CFS patients reacted to antibody with IFC.
In contrast, 16 healthy control PBMC cultures tested negative. These results were confirmed by Western blots (Fig 2, B and C)... Samples from five healthy donors exhibited no expression of XMRV proteins (Fig 2C).
From what I read Fig. 2C was originally done to make sure the controls were negative. And the western blots were confirming the IFC. (just fact checking, not a scientist)
Fuller quote (my typing)
To determine whether XMRV proteins were expressed in PBMCs from CFS patients, we developed intracellular flow cytometry (IFC) and Western blot assays, using antibodies (Abs) with novel viral specificities. These antibodies inluded, among others (i) rat monoclonal antibody (mAb) to the spleen focus-forming virus (SFFV) envelope (Env), which reacts with all polytropic and xenotropic MLVs... {...re:more antibodies} All of these Abs detected the human VP62 XMRV strain... IFC of activated lymphocytes revealed that 19 of 30 PBMC samples from CFS patients reacted with the mAb to MLV p30 Gag (Fig 2A)....In contrast, 16 healthy control PBMC cultures tested negative (Fig 2A and S4A). These results were confirmed by Western blots (Fig 2, B and C) using Abs to SFFV env, mouse xenotropic MLV, and MLV p30 Gag. Samples from five healthy donors exhibited no expression of XMRV proteins (Fig 2C).
http://www.sciencemag.org/content/326/5952/585.full available free with password
biophile
Places I'd rather be.
- Messages
- 8,977
I wasn't really trying to make an overall sharp point, and what I said obviously does apply to disease in general, but some comments about genetics on this thread reminded me the issue of whether ME/CFS is new or not and I went on a tangent. I also wanted to comment about the harsh reality that would face ME/CFS patients without the support structure that many people would love to see taken away from them "for the patients' own good". We are not sure if there really is an increase in ME/CFS prevalence since the 1980's as opposed to increased recognition. Personally I think it may have been around for a long time but if it is a multifactorial condition then some of the contributing factors may be recent. As I was saying, many people given a CFS diagnosis today would probably have been given a misguided psychiatric diagnosis instead or no diagnosis at all.
<a two paragraph rant about personal experience and the quagmire of ME/CFS removed to use later elsewhere>
Peter White once said that biomedical science is heading up a "blind alley". I think the opposite is true and it will continue the trend of becoming more complex and precise. Even if psychosocial factors become more recognized as relevant to illness or more opined as such, biology will still be the underlying substrate to yield up important clues. [alex3619] discussed the combination of genetics and toxins and viruses. Talk of toxins is unfortunately often stained with quackery and pseudoscience, but what Alex said makes sense. Also IIRC there is more research coming out concerning the subtle effects of low levels of toxins on genetics and even transferral of gene expression over multiple generations.
For anyone who is interested in evidence for the existence of the CFS symptom cluster around the world, I've seen a few individual studies conducted in Brazil and Nigeria, but Hickie et al 2009 (http://www.ncbi.nlm.nih.gov/pubmed/19085525 | http://www.cfids-cab.org/cfs-inform/CFS.case.def/hickie.etal08.pdf) combines 33 studies across a wide variety of 21 countries and confirms the general construct validity of CFS, and "a five-factor model of the key symptom domains was preferred (musculoskeletal pain/fatigue, neurocognitive difficulties, inflammation, sleep disturbance/fatigue and mood disturbance"). This is not necessarily absolutely conclusive, or representative of Canadian criteria, but it does show how statements like "CFS doesn't exist in poor countries where people have to work" is basically just another CFS assfact that permeates society.
Hehe!
<a two paragraph rant about personal experience and the quagmire of ME/CFS removed to use later elsewhere>
Peter White once said that biomedical science is heading up a "blind alley". I think the opposite is true and it will continue the trend of becoming more complex and precise. Even if psychosocial factors become more recognized as relevant to illness or more opined as such, biology will still be the underlying substrate to yield up important clues. [alex3619] discussed the combination of genetics and toxins and viruses. Talk of toxins is unfortunately often stained with quackery and pseudoscience, but what Alex said makes sense. Also IIRC there is more research coming out concerning the subtle effects of low levels of toxins on genetics and even transferral of gene expression over multiple generations.
For anyone who is interested in evidence for the existence of the CFS symptom cluster around the world, I've seen a few individual studies conducted in Brazil and Nigeria, but Hickie et al 2009 (http://www.ncbi.nlm.nih.gov/pubmed/19085525 | http://www.cfids-cab.org/cfs-inform/CFS.case.def/hickie.etal08.pdf) combines 33 studies across a wide variety of 21 countries and confirms the general construct validity of CFS, and "a five-factor model of the key symptom domains was preferred (musculoskeletal pain/fatigue, neurocognitive difficulties, inflammation, sleep disturbance/fatigue and mood disturbance"). This is not necessarily absolutely conclusive, or representative of Canadian criteria, but it does show how statements like "CFS doesn't exist in poor countries where people have to work" is basically just another CFS assfact that permeates society.
Hehe!