Are Infections Just a Trigger of ME/CFS, or an Ongoing Cause of ME/CFS?

[Marco]

I was working from that article, rather than the post.

Gotcha - apologies.

 

[RYO]

From what I picked up first off this looks like Richard Burt, who is close to Anne Traynor, who I know from lupus work. They seem to be using high dose cyclo and anti-thymocyte globulin to ablate.

If it is determined that ME is an autoimmune disease, do you think non-ablative stem cell transplant can potentially offer long term remission?

 

[Jonathan Edwards]

If it is determined that ME is an autoimmune disease, do you think non-ablative stem cell transplant can potentially offer long term remission?

I do not know what you mean by non-ablative - we seem to have established that the regimen used in Chicago is ablative.

 

[RYO]

I do not know what you mean by non-ablative - we seem to have established that the regimen used in Chicago is ablative.

"A non-myeloablative transplant, sometimes referred to as a "mini" or reduced intensity transplant, allows you to have less intensive chemotherapy before transplantation with autologous hematopoietic stem cells. This approach may be recommended for a variety of reasons including your age, type of disease, other medical issues, or prior therapies."

 

[Jonathan Edwards]

"A non-myeloablative transplant, sometimes referred to as a "mini" or reduced intensity transplant, allows you to have less intensive chemotherapy before transplantation with autologous hematopoietic stem cells. This approach may be recommended for a variety of reasons including your age, type of disease, other medical issues, or prior therapies."

I think this refers to the fact that now we have specific lympho-ablative drugs like rituximab and Campath1H in addition to ATG you can ablate the adaptive immune system enough to 'reboot' without life threatening ablation of neutrophils and monocytes. So I think this is still ablative in the sense of immunoablative. You still have to 'wipe the adaptive hard disc' before rebooting, otherwise there is no point. That is clearly a big practical advantage in terms of reducing morbidity and mortality from infection. One of the problems for autoimmunity seems to be that you may need the high dose cyclo to get rid of plasma cells and even some memory B cells. I have not seen recent data from Anne or Dr Burt on autoimmune disease so I am not sure how things are going. This 'mini' approach may be just what we need but in the past the experience was that even with full blown ablative preparation long term remission was not common. I had a long conversation with Anne about this in Chicago maybe around 2009 and we agreed that the magic extra ingredient was not yet on the shelves, but it would be great if that has changed - it might also prove very good on risk/benefit to scale back to 'mini' even if long term remission is not assured.

 

[msf]

This looks like a paper but I actually think it is a pseudopaper. It is not published anywhere as far as I can see. The presentation of the data looks as if it has been made up along the way. There are lots of P>0.001 attached to no actual numbers! I am fairy sure it is just an advert.

It´s not an advert, adverts try to sell you something. The paper was in the British Journal of Medical Practitioners, so unless that´s a pseudojournal, it´s not a pseudopaper. The odd thing is that the paper does not contain the graphs presented in the Townsend Letter article.

 

[Jonathan Edwards]

It´s not an advert, adverts try to sell you something. The paper was in the British Journal of Medical Practitioners, so unless that´s a pseudojournal, it´s not a pseudopaper. The odd thing is that the paper does not contain the graphs presented in the Townsend Letter article.

I think it is selling blood tests. The British Journal of Medical Practitioners seems to be a pseudojournal. Nobody in Britain would ever call a journal that - you don't have journals of practitioners. You might have a journal of medical practice or a jounral of a college of practitioners but not a journal of medical practitioners. Nobody in the UK calls themself that except on a passport. So it is no surprise to see that this seems to be an Indian journal giving the appearance of being British. And so on. If there were no graphs then goodness knows what one is supposed to make of it.

 

[Mel9]

I think it is selling blood tests. The British Journal of Medical Practitioners seems to be a pseudojournal. Nobody in Britain would ever call a journal that - you don't have journals of practitioners. You might have a journal of medical practice or a jounral of a college of practitioners but not a journal of medical practitioners. Nobody in the UK calls themself that except on a passport. So it is no surprise to see that this seems to be an Indian journal giving the appearance of being British. And so on. If there were no graphs then goodness knows what one is supposed to make of it.

The graphs do look a bit odd

 

[msf]

I think it is selling blood tests. The British Journal of Medical Practitioners seems to be a pseudojournal. Nobody in Britain would ever call a journal that - you don't have journals of practitioners. You might have a journal of medical practice or a jounral of a college of practitioners but not a journal of medical practitioners. Nobody in the UK calls themself that except on a passport. So it is no surprise to see that this seems to be an Indian journal giving the appearance of being British. And so on. If there were no graphs then goodness knows what one is supposed to make of it.

Why would there be graphs? It was an article summing up recent research into the role of chronic infections in neurodegenerative diseases, not presenting new evidence. And it is a British journal, or at least most of editorial board are based in the UK (there are some British Indians now).

http://www.bjmp.org/content/editorial-executive-board

Some of them are even white!

http://www.cuh.org.uk/cancer-servic...ther-doctors/all-consultants/dr-robert-thomas


Here is the paper again in Medscape, where they attribute it to Lab Med journal (I think the BJMP might only have published the first part): http://www.medscape.com/viewarticle/574944

 

[msf]

Also, it doesn´t mention any specific blood tests, which is generally a good clue that it isn´t an advert - Coke do not produce adverts talking about the wonderful properties of brown, sugar-filled liquids.

 

[barbc56]

references to Garth Nicholson. Seems an interesting chap.

Very interesting, although I can think of several other adjectives which aren't as subtle as yours.

Garth and his wife Nancy Nicolson are conspiracy theorists. The flu epidemic of 1918 was created by the goverment, Bush was responsible for 9/11, vaccines and/or biological weapons are responsible for many diseases including me/cfs. They are HIV denialist. Gulf War veterans were exposed to biological warfare which does have some credibility, but he doesn't stop there!

The Nicholsons claim they were contacted on several occasions before 9/11 with specific details that an attack was going to happen. Of course they reported this after the fact.

I would think it would be prudent to scrupulously check anything he has said or written.

Barb

 

[barbc56]

@msf wrote.

Some of them are even white!

http://www.cuh.org.uk/cancer-servic...ther-doctors/all-consultants/dr-robert-thomas

Some of this guys qualifications.

He designed the UK’s first government approved course for a qualification in cancer exercise rehabilitation.

I wonder if he also recommends CBT.

He is an editorial member of the National Cancer Research Complementary therapy Research Committee

Integrated Oncology

https://www.sciencebasedmedicine.org/integrative-oncology-the-trojan-horse-that-is-quackademic-medicine-infiltrates-asco/

 

[msf]

Very interesting, although I can think of several other adjectives which aren't as subtle as yours.

Garth and his wife Nancy Nicolson are conspiracy theorists. The flu epidemic of 1918 was created by the goverment, Bush was responsible for 9/11, vaccines and/or biological weapons are responsible for many diseases including me/cfs. They are HIV denialist. Gulf War veterans were exposed to biological warfare which does have some credibility, but he doesn't stop there!

The Nicholsons claim they were contacted on several occasions before 9/11 with specific details that an attack was going to happen. Of course they reported this after the fact.

I would think it would be prudent to scrupulously check anything he has said or written.

Barb

Shouldn´t you do that for everyone? Who do you give a free pass too?

I find some of Francis Collins´ views equally baffling, but that doesn´t make me think that he must be a bad scientist or doubt the Human Genome Project.

 

[msf]

@msf wrote.


Some of this guys qualifications.


I wonder if he also recommends CBT.

Integrated Oncology

h[URL='https://www.sciencebasedmedicine.org/integrative-oncology-the-trojan-horse-that-is-quackademic-medicine-infiltrates-asco/']ttps://www.sciencebasedmedicine.org/integrative-oncology-the-trojan-horse-that-is-quackademic-medicine-infiltrates-asco/[/QUOTE[/URL]]

.

That still doesn´t make him Indian, or the journal a pseudojournal, anymore than the PACE stuff makes the Lancet a pseudojournal.

That science based medicine site needs another site examining their statements.

 

[barbc56]

I find some of Francis Collins´ views equally baffling, but that doesn´t make me think that he must be a bad scientist or doubt the Human Genome Project.

I agree.

If you're referring to the fact that Dr. Collin's is very religious, he does believe in theistic evolution, that science and religion can coexist. He contends that his religious beliefs don't affect his research. For example he backs the scientific theory of evolution but that there's a higher power behind the scientific principles. I dont know if this is the reality of the situation but on the surface his work seems to adhere to the principle of approaching research without preconceived notions.

The following says it better.

Collins argues that science and faith can be compatible. In an interview on the Point of Inquiry podcast he told D. J. Grothethat “the scientific method and the scientific worldview can't be allowed to get distorted by religious perspectives”, but he does not think “being a believer or a non-believer affects one's ability to do science”

https://en.m.wikipedia.org/wiki/The_Language_of_God:_A_Scientist_Presents_Evidence_for_Belief
If you're referring to the fact that Dr. Collins worked for the NHS, It goes without saying that working for a government agency and all the bureaucratic SNFUs that go with it can be a problem which shouldn't be overlooked.

Nicholson appears to be so emeshed in his conspiracy theories, they seem to drive his research when it should be the other way around. Please keep in mind this is my personal opinion.

Shouldn´t you do that for everyone? Who do you give a free pass too?

No one gets a free pass! To be clearer, and again this is my personal opinion, there seems to be a favorable bias for some scientists because they are personable or we believe in their treatments even though they aren't backed by medical plausibility. In doing this we might overlook some negative aspects such as conflict of interest, professional behavior or political maneuvering that we would not accept in mainstream medicine.

I am not saying mainstream medicine/science isn't biased or political. It is. What I am saying is that we need to expect the same high standards for all. Simply put, whats good for the goose is good for the gander.
Barb

 

[msf]

I believe Francis Collins works for the NIH, not the NHS. I specifically did not refer to which of his views I find baffling, as I believe the forum rules do not permit me to discuss them.

No one gets a free pass! To be clearer, and again this is my personal opinion, there seems to be a favorable bias for some scientists because they are personable

Well, this isn´t KDM - have you ever met him? In my opinion, he is an excellent physician, but ´personable´ is not the adjective I would use to describe him.

Personable...Lipkin? Montoya? Prof. Edwards?

 

[MeSci]

Personable...Lipkin? Montoya? Prof. Edwards?

Are we having a beauty contest now?

 

[barbc56]

personable or

 

[msf]

I understand what ´or´ means. I wanted to know who fits in the personable category, or were you just theorising?

 

[Sasha]

Early onset ME is supposed to have a better chance of remission - much better. Otherwise I am not sure that differences have been found.

I've just been watching Dr Bell's presentation:

and at around 41:50 he talks about kids who got sick, whom he followed up at intervals over the years. He says that they get better at first but at about 35 years of age, they go sharply downhill.

I'm wondering how this relates to the two-peak age distribution (among other things).