Rituximab Phase III - Negative result

[bertiedog]

On the average day, before I started the beta blocker, my HR was going into the 160's and 170's and nothing was stopping it.

I have had this too especially when I have had something like the Noravirus but I was getting high HR daily before full blown ME/CFS kicked in. Later I developed symptoms of POTS too but had a diagnosis of ME/CFS by then. I am so grateful that Propananol 10 or 20 mg gets this under control within 45 minutes, its like a miracle drug for me and never have had side effects from it. However if one had low bp then maybe it could be a problem.

Before treatment of my thyroid and adrenals I used to have extremely low bp to the point of extreme dizziness/blackness and I am sure then all I could tolerate would be 10 mg but I still needed it or my heart would go crazy upon exertion.

I still only take 10 mg twice daily of Propananol and it means I hardly know I still have POTS but that is until I go into a store where the heating is always too much for me plus standing and then it comes back pretty quickly and I have to get out because my legs get so heavy and feel like they won't hold me up any longer. After that I need a good lie down and use my oxygen concentrator for 30 minutes in order to recover. That way it can stop me getting PEM.

Pam

 

[notmyself]

i belive it will never be something that ''cure'' improve as all, i might be wrong but in my opinion we have different diseases,is more than more obvious ,the symptoms, the onset can be very different from a person to another..Me/CFS doesn't mean anything to me anymore..even the diagnostic criteria is different from one medical establishment to another, the name of the disease itself is curios, Myalgic encephalomyelitis, yet most don t have signs of brain or spinal cord inflamation,and even myalgia is not mandatory, so what on world is that..Is different from all of us, and we probably need individual treatment, makes things so much harder,but that the reality..The ''subgroups'' of me/cfs are in my opinion simply different diseases from one another wich share some common symptoms..

 

[TreePerson]

Hi Deleder2k... I am an example of someone who doesn't meet Fukuda (Since onset over 2 years ago I haven't had a sore throat, tender lymph nodes, new types of headaches, joint pain, specific muscle pain, and I wouldn't say I have had unrefreshing sleep or fatigue like they mean it), and I have had severe brain fog but only as a result of PEM...

But looking at ICC I meet Sections A and D all the time very severely and B when I have overexerted but not C...But from communicating on forums and groups there seems to be a large % (maybe 50% of ME sufferers who actually stop getting flu like illnesses when they get ME) so I think a lot of people don't meet Criteria C...

In the chart that @deleder2k posted it states that you must have one symptom from all five sections of group C.(immune gastro genitourinary). This would mean needing susceptibility to viral infections in order to meet ICC criteria. Which as you rightly say would exclude a lot of people including me who mainly no longer catch viruses.

Me- paedia give the requirement as needing to have symptoms in three out of five subcategories. This would mean that I would qualify as the viral susceptibility would no longer exclude me.

In the past when I have looked at the criteria (I can't remember where) I had thought I qualified. Can anyone confirm which is correct?

 

[Marky90]

Marky, are you sure it's OK to publish that slide on the internet? The data are marked as 'unpublished' and we don't want to do anything to make it harder for them to publish a paper.

Hey, what were you thinking could be problematic? Nothing springs to my mind

 

[Martin aka paused||M.E.]

i belive it will never be something that ''cure'' improve as all, i might be wrong but in my opinion we have different diseases,is more than more obvious ,the symptoms, the onset can be very different from a person to another..Me/CFS doesn't mean anything to me anymore..even the diagnostic criteria is different from one medical establishment to another, the name of the disease itself is curios, Myalgic encephalomyelitis, yet most don t have signs of brain or spinal cord inflamation,and even myalgia is not mandatory, so what on world is that..Is different from all of us, and we probably need individual treatment, makes things so much harder,but that the reality..The ''subgroups'' of me/cfs are in my opinion simply different diseases from one another wich share some common symptoms..

And how would you explain that Ron Davis and his team found the same anomalies in metabolism in every ME patient and that his nano-chip also works in every ME patient?

I believe in subgroups... But I think it is crucial to look after PEM. Because I think that this is the "main" symptom that differs ME from other diseases...

 

[ryan31337]

Criteria: I edited my post, but it seems that a majority that have ME according to the CCC also have it according to Fukuda. That is not very strange.

There are major differences, but I don't understand how anyone with ME according to Canada criteria only can check off one symptom from the Fukuda list.

http://bmjopen.bmj.com/content/4/2/e003973

That's a really useful pic, thanks @deleder2k.

For what its worth, at onset I met all criteria. Now after relapse following significant remission I struggle to strictly meet Fukuda criteria (only 2 or perhaps 3 out of 4) but would still meet CCC and ICC.

My feeling this is because I have developed more significant Dysautonomia from a secondary disease - or perhaps this is just a natural ME/CFS progression over 20 years...

 

[bertiedog]

And how would you explain that Ron Davis and his team found the same anomalies in metabolism in every ME patient and that his nano-chip also works in every ME patient?

That is very interesting but I am not sure it correlates with what Dr Lipkin and Maddy Hornig found in their study a couple of years ago where the patients who had the illness for less than 3 years looked very different from those with longer duration?

Pam

 

[Sasha]

Hey, what were you thinking could be problematic? Nothing springs to my mind

In order to have the best chance of getting published in a journal, researchers generally like to keep their unpublished research out of the wider public eye so that it's still 'news' when it's published. I'm concerned that your putting that slide on the internet will damage F&M's chances of getting published.

Best to remove it?

 

[notmyself]

That is very interesting but I am not sure it correlates with what Dr Lipkin and Maddy Hornig found in their study a couple of years ago where the patients who had the illness for less than 3 years looked very different from those with longer duration?

Pam

many studies don't corellate..that the reality..same with inflamation and citokines..

 

[Martin aka paused||M.E.]

That is very interesting but I am not sure it correlates with what Dr Lipkin and Maddy Hornig found in their study a couple of years ago where the patients who had the illness for less than 3 years looked very different from those with longer duration?

Pam

But did they look at the same metabolites?

 

[Gijs]

I would be amazed if study participants didn't have the autoantibody tests done and Fluge and Mella don't already have these data but even if they don't with such a big group it will be a simple matter of getting participants to do the cell trend tests now that study is finished and see if the responders are the ones with the positive cell trend results...

The AB test in Cell Trend isn't reliable!!!!!!

 

[pamojja]

I relied on forum/Facebook groups methods for 3 years, in a lack of doctors and finances, got me nowhere.

If one reads the actual Coimbra protocol against MS, it's very clear that one precedes on very thin ice without supervision of a knowledgeable doc and regular lab testing.

I had Coimbra trained, 'knowledgeable' doctor...and regular labs... but they dont know much since no studies..I spoke to Coimbra personally several times,..

...not sure why you think its thin ice if pactically no negative reports and thousands positive..

With your first sentence you said in lack of finances and doctors. Therefore I assumed you proceeded without docs, but with forum/Facebook methods, which you presented as having failed you. Thanks for clarifying, and that it was the docs who failed.

 

[Marky90]

In order to have the best chance of getting published in a journal, researchers generally like to keep their unpublished research out of the wider public eye so that it's still 'news' when it's published. I'm concerned that your putting that slide on the internet will damage F&M's chances of getting published.

Best to remove it?

Pretty sure Mella would ask the audience not to take pictures, if that was an issue.. They know their slides go on the internet

 

[Sasha]

Pretty sure Mella would ask the audience not to take pictures, if that was an issue.. They know their slides go on the internet

I'm not sure that's a safe assumption. What do you think, @Jonathan Edwards?

 

[Sidereal]

The AB test in Cell Trend isn't reliable!!!!!!

I wonder if there's anyone out there who hasn't tested "positive" on these antibodies.

 

[Rossy191276]

I wonder if there's anyone out there who hasn't tested "positive" on these antibodies.

There was a thread on this a while ago... I tested negative on all 9 even though i thought there was a big chance I would be positive due to similar symptoms to people I had read about who were positive... I likely have the opportunity to try IVIG but my doctor and I have no idea whether I should given I haven't tested positive to any antibodies so far and I have had severe negative reactions to several common drugs used so far

 

[Ember]

Me- paedia give the requirement as needing to have symptoms in three out of five subcategories. This would mean that I would qualify as the viral susceptibility would no longer exclude me.

In the past when I have looked at the criteria (I can't remember where) I had thought I qualified. Can anyone confirm which is correct?

Try this:

THE INTERNATIONAL CONSENSUS CRITERIA What is it? Do I fit the criteria?
Posted by MEadvocacy Advisory-Committee 5sc on October 29, 2016

 

[Martin aka paused||M.E.]

I wonder if there's anyone out there who hasn't tested "positive" on these antibodies.

As far as I am informed Prof Scheibenbogen (kind of the inventor of this test) never recommended it to CFS patients for diagnosis... and you wont find it on the Charité website except of a link to the study at the bottom. https://immunologie.charite.de/pati...chronisches_fatigueerschoepfungs_syndrom_cfs/

I think that says it all...

 

[pibee]

With your first sentence you said in lack of finances and doctors. Therefore I assumed you proceeded without docs, but with forum/Facebook methods, which you presented as having failed you. Thanks for clarifying, and that it was the docs who failed.

yes i figured that's what you meant.. i lacked resouces for testing antibodies,infections,etc..where i live nobody even heard of MECFS or lyme.. Coimbra protocol is cheap..was only option. when i started in 2014 my budget was $40 a month,tests included, because even family didtn believe i'm sick...wish i knew better not stat if you cant explore in depth your condition which is so serious.

just like many i'm a victim of whole system failing on us, not just 1 thing

what was my first thought yesteday when negative results were published...was sadness how many more suicides in the following years will come because of not only lack of treatment but recognition it's a real disease..so isolation...because positive results would forever shut psychobabblers mouth

 

[Martin aka paused||M.E.]

what was my first thought yesteday when negative results were published...was sadness how many more suicides in the following years will come because of not only lack of treatment but recognition it's a real disease..so isolation...because positive results would forever shut psychobabbles mouth

That is exactly what I felt.