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    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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A LOT of totally incorrect/wrong information and advice given

leokitten

Senior Member
Messages
1,542
Location
U.S.
And I say this as someone who was once told by an INFECTIOUS DISEASE SPECIALIST that herpes viruses simply cannot reactivate later in life (Hello! Shingles?). So I am not one who accepts information uncritically from anyone.

The infectious disease specialist I went to had no idea that tell tale symptoms, clinical signs and very high IgG antibody titers are suggestive/indicative of a possible chronic or reactivated infection. He looked at my IgM titers and because they were negative he said, "nope you have no active infection these IgGs are just from past infections".
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I certainly will, honestly I feel it is a duty because this disease is horrible I feel not really "alive" anymore and we need to help each other out . When I first realized that I might have it and read so many stories of people living with it for 10, 20 years or more I broke down into tears out because the hell its been just having this 9 months and how much it has already taken away from my life I felt so bad for others having to live so long with it like this and not being able to get help years ago because much less was known.

it's an eye opener isn't it. I knew there was an illness called ME/CFS but I knew basically nothing about it before I got ill, and I just assumed, rather naively, that people with the illness were being helped out and research was progressing toward figuring it out with an appropriate level of urgency. After all, that's one of the things we pay our taxes for, right?
I had no idea that there were SO MANY people suffering from the disease, that it was this bad, and that the community was so neglected and mistreated. Like you, I read about people having this illness for decades and I found it heartbreaking. Though I myself am now closer to 10 years than 5 of having this illness now. Change is slow.

As a scientist working with cancer, how aware of ME/CFS/CFIDS were you before you got ill?

I hope you are able to find a way to recover quickly and fully.
 

wdb

Senior Member
Messages
1,392
Location
London
What I've learned is that nothing has shown to be a definite proven treatment that will always work for everybody, but that the earlier in the disease process you begin treating it the much higher your chances are of fully or mostly recovering,

Where is the evidence base for this ? how can you rule out the possibility that some people might come down with a mild case of ME and recover and others might come down with a more severe form and take longer to recover or don't recover. Attempted treatment may be irrelevant.



and that you must take a multi-pronged/faceted treatment approach

Again where is the evidence for this, has this been demonstrated in clinical trials ?
 

vamah

Senior Member
Messages
593
Location
Washington , DC area
What I've learned is that nothing has shown to be a definite proven treatment that will always work for everybody, but that the earlier in the disease process you begin treating it the much higher your chances are of fully or mostly recovering, and that you must take a multi-pronged/faceted treatment approach by first getting as much data/information you can about what are the possible causes/contributing factors to your particular disease and using that information to design a treatment plan. When deciding what treatments to do over others in certain aspects of CFIDS certain treatments have more sound scientific evidence behind them than others.

For example in the area of viral infection contributing to the disease and or symptoms, if you have high CMV and/or HHV-6 titers then taking Valcyte is so far the most scientifically reasonable thing to do.

Someone else wrote that lab tests and other tests and clinical information are just measurements and not necessarily a good guide to determine cause and therefore treatment. But what is the alternative just to take shots in the dark? It is always better to have as much information as possible regardless if you are going to use it to decide on treatment.

I wish doctors followed this advice. My "specialist" refused to treat me for herpes viruses and said he wouldn't treat me even if they were high because valcyte was not a unanimously agreed upon treatment. Unfortunately, many doctors (especially in managed care) don't think that "scientifically reasonable" is a high enough standard.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
As a scientist working with cancer, how aware of ME/CFS/CFIDS

Before this year not so much, only knew that the scientific community finally knew that this disease is physical and not psychological like previously thought.

Some of the cancers I research are EBV or HIV infection related, so I already had a lot of information and knowledge on viruses so that helped a lot with the viral infection aspect of CFIDS.
 

SOC

Senior Member
Messages
7,849
I just think we should keep the debate civil.


Absolutely.

We also need to keep in mind that civility needs to exist on ALL sides, and includes trying to avoid arrogance and paternalism. Treating other members like inferiors is not civil. That said, we all suffer from different degrees of pain, brain fog, and frustration, so none of us is likely to be at the top of our social game. Understanding and tolerance of our differences -- educational, professional, social, financial, medical, etc, etc --- is crucial to our mutual support and progress.
 

vamah

Senior Member
Messages
593
Location
Washington , DC area
The infectious disease specialist I went to had no idea that tell tale symptoms, clinical signs and very high IgG antibody titers are suggestive/indicative of a possible chronic or reactivated infection. He looked at my IgM titers and because they were negative he said, "nope you have no active infection these IgGs are just from past infections".

That's why forums like this can really help people. If I hadn't been told by someone else that my doctor was full of it, I would have accepted what he said and done what my HMO wanted me to do: take more antidepressants and leave them alone.
 
Messages
64
No one knows what the role of viruses in ME is, if indeed they even do play a role.

We can speculate, as we do on this board. But no one knows yet.

Why don't you tell us a bit more about what you think of Rituximab? I'm personally interested in that and have tried reading a bit of literature. But keep in mind, I don't have a scientific degree, so will be unable to talk back in those terms.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
No one knows what the role of viruses in ME is, if indeed they even do play a role.

This is ABSOLUTELY NOT TRUE. There is a good deal of scientific research which is indicative that certain viruses DO play a role in CFIDS as possible initial causes (for some cases) or contributing factors to the disease worsening and/or symptoms.

It would take me a while to pull every paper out for you and show you that there is a likely role. Where should I start? Viral caused dysregulation of mitochondrial function? Viral dysregulation of the immune system and immune system suppression? Viral infection of many types of different cells (brain, vascular, etc) and the changes they cause in cell function?
 

SOC

Senior Member
Messages
7,849
Haha, leokitten forgot where s/he put her keys. I forgot which year it was, how to operate a vehicle as well as how to sign my signature.


:) "Brain fog" hardly describes our cognitive impairments does it? Losing things, losing words, losing concepts, losing abilities (like driving a car).... "brain fog" is a lot like "fatigue".

I, a (former) research engineer and college instructor, couldn't read a book or even an article because of focus problems (visual and mental) resulting from ME/CFS. That was a major trauma for me. My identity was built around my professional skill. Poof! Gone in a metaphorical instant.

Brain fog at that level is what put a number of us here out of work before the physical toll took over. No one wants an engineer, scientist, researcher, lawyer, whatever, who can't read and follow a page of text.

A lot of us have had to stop driving because of cognitive issues. Brain fog and it's associated cognitive brethren are a major nightmare of this illness that isn't talked about enough, imo.

I'm glad to say that Valcyte treatment (for HHV-6 in my case) improved the cognitive problems hugely. I can read a book and drive these days. :balloons: Unfortunately, a huge improvement is still not enough to make it as simple as it was pre-ME/CFS to read technical papers and the like.
 

SOC

Senior Member
Messages
7,849
This is ABSOLUTELY NOT TRUE. There is a good deal of scientific research which is indicative that certain viruses DO play a role in CFIDS as possible initial causes (for some cases) or contributing factors to the disease worsening and/or symptoms.

It would take me a while to pull every paper out for you and show you that there is a likely role. Where should I start? Viral caused dysregulation of mitochondrial function? Viral dysregulation of the immune system and immune system suppression? Viral infection of many types of different cells (brain, vascular, etc) and the changes they cause in cell function?


While I agree with you completely on this point, it is certainly NOT considered a scientific certainty. Try asking the CDC, or the NIH, or HHS, or the NHS in the UK, or pick almost any medical authority in any country. The scientific/medical authorities the world over say the scientific evidence for viruses in ME/CFS is inconclusive at best. That is the very reason why the vast majority of ME/CFS patients cannot get antiviral treatment or even testing -- medical science has (so far) declared that treatable viruses are not a major factor in ME/CFS. I'm surprised that with all your reading in the ME/CFS arena -- papers, blogs, and all those other sources you listed -- that you haven't come across this problem.

Let me repeat to be clear -- I agree that that viruses play a major ongoing role in ME/CFS. Very, very many patients agree with that theory. The current medical establishment does not.
 
Messages
64
I'm not saying viruses can't cause this illness or be reactivated because of it. But bacterial infections can also play a triggering role like we see in Post Q fever, post lyme, post rickettsia etc. Likewise, so can physical trauma, mental trauma, chemical exposures etc.

But how can you say you know how to recover completely from this illness by for example treating viruses, yet there are people who have no viral activity? Your studies are probably interesting and informative and above my head, but there's still no evidence that pathogens play a role in everyone. Thus, at this stage, we can't assume that our doctor is wrong when he says we probably don't have a viral infection, when neither the bloodwork nor the symptoms match. Viruses may play a role in your specific concoction of cfs, but not mine.

Maybe we actually agree on what is being said here. Its your claim in your initial post that bothered me.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
Why don't you tell us a bit more about what you think of Rituximab? I'm personally interested in that and have tried reading a bit of literature

The Rituximab idea was started by a group in Norway at Haukeland University. Here was their first paper and then clinical trial:

Clinical impact of B-cell depletion with the anti-CD20 antibody rituximab in chronic fatigue syndrome: a preliminary case series.
http://www.ncbi.nlm.nih.gov/pubmed/19566965

Benefit from B-lymphocyte depletion using the anti-CD20 antibody rituximab in chronic fatigue syndrome. A double-blind and placebo-controlled study.
http://www.ncbi.nlm.nih.gov/pubmed/22039471

As we've seen happen before (with the Montoya Valcyte papers and trial), the initial very small study showed positive results but then the larger clinical trial didn't really reproduce those results and yielded more questions than answers as to what is possibly going on.

I am looking forward to seeing the results of the Kogelnik clinical trial using Valcyte + Rituximab if he ever does it.
 

wdb

Senior Member
Messages
1,392
Location
London
This is ABSOLUTELY NOT TRUE. There is a good deal of scientific research which is indicative that certain viruses DO play a role in CFIDS as possible initial causes (for some cases) or contributing factors to the disease worsening and/or symptoms.

It would take me a while to pull every paper out for you and show you that there is a likely role. Where should I start? Viral caused dysregulation of mitochondrial function? Viral dysregulation of the immune system and immune system suppression? Viral infection of many types of different cells (brain, vascular, etc) and the changes they cause in cell function?


I have to agree with chronix here, you can cherry pick a few papers if you like but there really is no scientific consensus as to the involvement of viruses in ME, the evidence is far from conclusive.

Here is one of the most recent, it's moderately encouraging at best.

Randomized clinical trial to evaluate the efficacy and safety of valganciclovir in a subset of patients with chronic fatigue syndrome


Abstract
There is no known treatment for chronic fatigue syndrome (CFS). Little is known about its pathogenesis. Human herpesvirus 6 (HHV-6) and Epstein–Barr virus (EBV) have been proposed as infectious triggers. Thirty CFS patients with elevated IgG antibody titers against HHV-6 and EBV were randomized 2:1 to receive valganciclovir (VGCV) or placebo for 6 months in a double-blind, placebo-controlled trial. Clinical endpoints aimed at measuring physical and mental fatigue included the Multidimensional Fatigue Inventory (MFI-20) and Fatigue Severity Scale (FSS) scores, self-reported cognitive function, and physician-determined responder status. Biological endpoints included monocyte and neutrophil counts and cytokine levels. VGCV patients experienced a greater improvement by MFI-20 at 9 months from baseline compared to placebo patients but this difference was not statistically significant. However, statistically significant differences in trajectories between groups were observed in MFI-20 mental fatigue subscore (P = 0.039), FSS score (P = 0.006), and cognitive function (P = 0.025). VGCV patients experienced these improvements within the first 3 months and maintained that benefit over the remaining 9 months. Patients in the VGCV arm were 7.4 times more likely to be classified as responders (P = 0.029). In the VGCV arm, monocyte counts decreased (P < 0.001), neutrophil counts increased (P = 0.037) and cytokines were more likely to evolve towards a Th1-profile (P < 0.001). Viral IgG antibody titers did not differ between arms. VGCV may have clinical benefit in a subset of CFS patients independent of placebo effect, possibly mediated by immunomodulation and/or antiviral effect. Further investigation with longer treatment duration and a larger sample size is warranted. J. Med. Virol. 85:2101–2109, 2013. © 2013 Wiley Periodicals, Inc.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
I'm not saying viruses can't cause this illness or be reactivated because of it. But bacterial infections can also play a triggering role like we see in Post Q fever, post lyme, post rickettsia etc. Likewise, so can physical trauma, mental trauma, chemical exposures etc.

But how can you say you know how to recover completely from this illness by for example treating viruses, yet there are people who have no viral activity? Your studies are probably interesting and informative and above my head, but there's still no evidence that pathogens play a role in everyone. Thus, at this stage, we can't assume that our doctor is wrong when he says we probably don't have a viral infection, when neither the bloodwork nor the symptoms match. Viruses may play a role in your specific concoction of cfs, but not mine.

Maybe we actually agree on what is being said here. Its your claim in your initial post that bothered me.

Yes you are totally right there was just a misunderstanding. You are right viruses don't play a role in every case of CFIDS sorry I didn't mean that. I meant that if you get lab work done and show that you have high viral and/or bacterial antibody titers or other results indicative of infection it is likely that it plays some role in your particular disease.
 
Messages
64
Nevermind, see it was edited by a mod.

Yes I agree with you now. In my own case, I'm still on abx for positive bacterial infections and it has made a difference. But I see many people who are on abx for months (even years) with no effect. I see that as a dangerous and irresponsible practise by both patient and doc. Here I'm talking about Chronic Lyme disease of course.

Have you worked with rituximab?