Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

[ukme]

So then does that mean that if you dont have EBV infection this isnt going to help you?

 

[Waverunner]

So then does that mean that if you dont have EBV infection this isnt going to help you?

I guess it's too early to make such an assumption because there are many other viruses next to EBV. However it would be very interesting to know why Rituximab works in some but not in all patients.

 

[Tia]

Hospital in Stockholm have goten ME-department

There has never before been a hospital here in Sweden with a department for ME-patients but now, one of (if not THE) biggest hospitals in our Capitol; Stockholm, have gotten money and started a department for ME-patients, it's called Danderyds hospital.

They have searched for Me-patients that wants to be in a study of theirs but have now been full, they got in 100 patients on the spot as far as I've heard. And if this little vountry have a department for this disease, then it WILL be a big thing soon. So hang on in there my fellow sicklings, we just might be cured if this norweigan thing is correct.

Link: http://www.ds.se/Web/NormalPage____5003.aspx

 

[Snow Leopard]

Do you know what sort of research they are doing at Danderyds Sjukhus?

 

[Tia]

Yes; (translation)

"The facility will be driven in projectform during three years with the purpose of developing treatment and rehabilitationforms for the patientgroup. The clinic shall be a knowledgebank for the primarycare that continualy is the first line of care for this patientgroup.

Our responsability is only in the area (ln, don't know the word for it) of Stockholm and we cannot take in patients from other areas.

The patients will at first hand be offered an extended multiprofessional evaulation by a rehabmedicalteam and later some of the patients will be offered suiting treatment and rehabilitation.

We will soon update this site with information around the knowledge we have started to build up, advice according to evaluation, estimation and eventual rehabilitation arrangements for patients with suspected ME/CFS.

We have taken inquiries from February 1'st and from the end of March taken patients in for an indepth 2 week teamevaulation with doctors, nurses, worktherapists, physiotherapist and psycologists.
Under the fall of 2011 we will increase the team with a (Hmm, kurator*) conversationperson and another doctors resource.

For now, we take two patients a week for the in depth multiprofessional evaluation, 2-3 patients a week for new visits to doctor, 3-4 revisits per week and 10-20 phonecontacts/advices per week."


*Kurator= Couldn't find the word in english but it's a person with a rather low education that often works in schools for talking to about your problems.

Lemme know if I missed something since I translated it word for word myself.

 

[max]

"We have taken inquiries from February 1'st and from the end of March taken patients in for an indepth 2 week teamevaulation with doctors, nurses, worktherapists, physiotherapist and psycologists."

don't think I'll be going to Sweden any time soon.

 

[sensing progress]

I wrote a short blog post on the Rituximab research; here's the link if anyone would like to read it: http://megettingwell.blogspot.com/2011/11/rituximab-and-immune-system-resetting.html

 

[biophile]

Some of the following comments or responses may be from another thread, sometimes it takes me too long to write a post and the conversation has already shifted around and escaped me:

Sure, caution is wise, I'm scared to try serious medications because of sensitivities to milder ones. But research sometimes needs to go out on a limb, what about the risk of another 20 years of being in the backwaters of poor science and psychobabble? Unless there is a massive increase in funding and interest, it will be another 20 years. I've had symptoms most of my life and I don't want to remain a second class citizen for the rest of my life.

As for van der Meer et al's criticism, some of their concerns are justified, but they basically had their arses handed to them in the replies. I'm getting sick and tired of seeing supposed CFS experts like these coming across as "captain reality check", only to be owned by the comments of mere plebeians. Their criticism also reeked of hypocrisy since half of these authors came out in full support of the PACE trial which has at least two of the methodological concerns mentioned in this letter. The mediocrity is blinding in the field of ME/CFS, it's frustrating and painful to watch, reminds me of SilverbladeTE's recent joke about how when it comes to ME/CFS we expect House but get Borat in a mankini. I'm no-one special, but neither am I posing as an "expert".

wdb wrote: But what I don't get is why the hell no one criticised the PACE trial for the same things, not only was it not double blind or even single blind, had a non comparable control group, and used the Chalder scale which also measures change in fatigue, where were their methodological concerns when that was published.

Esther12 wrote: People here had raised concerns about the difficulty of genuine blinding with a drug like Rituximab and the danger of placebo affects distorting results, the difficulty of assessing improvements, etc, etc. Some researchers only seem interested in making these sorts of criticisms of non-psychiatric CFS work, while trying to ignore the problems with research like PACE. Their talk of the needing a theoretical justification is particularly amusing in light of the way research undermining the role of both deconditioning and fear of activity as perpetuating factors in CFS was addressed in the Lancet's accompanying PACE editorial.

Esther12: I think PACE has made me much more cautious about trusting the claims made as part of any study!

Battery Muncher wrote: So I think it's useful to compare PACE with the Rituximab, to show that the psychiatric establishment hasn't got a leg to stand on - at least when it comes to criticising the rigour of the latter trial.

Good points. The most hilarious criticism from van der Meer et al was this: "What also remains unclear is whether the categorical definition of improvement was determined before the analysis; the discussion suggests this was done post hoc, suggesting this needs replication before any reliable interpretation is possible. Whether a physician-rated fatigue score is a relevant measure for a subjective complaint like fatigue is another questionable issue." For the PACE trial, all definitions of improvement based on fatigue and physical function were post hoc, ALL OF THEM, not just the definitions of "normal" but also the definition of "improvement"/"clinically useful difference". Also in the PACE trial, it was a physicians' rating which determined whether a serious adverse event was a negative reaction to the therapy or not.

Nielk wrote: I agree that it's biased and unspeakable that PACE was not thrown out first hand but, is that a reason not to be cautious with any other study?

Not to split hairs, but the PACE study should not have been "thrown out first hand", but first examined thoroughly. After doing so however, it could be thrown out second hand.

 

[Snow Leopard]

If anyone is curious about back calculation of the raw SF-36 scores using the calculator:
http://www.sf-36.org/nbscalc/index.shtml

Baseline (raw) for Rituxumab group:

PF 44.8
RP 0
BP 28.2
GH 21
VT 25.4
SF 16.8

PCS 24

Max Change (raw):

PF 76.5
RP 27
BP 58
GH 41.7
VT 40.5
SF 64.2

PCS 39.1

Note, the max change PCS from the paper was 37, suggesting that not all symptoms had the "Max change" improvement at the same time.

Non normalised USA 1998 population means:

PF 83.0
RP 77.9
BP 70.2
GH 70.1
VT 57.0
SF 83.6

PCS 50 (normalised).

Note, I hope I didn't make any mistakes.

 

[oceanblue]

If anyone is curious about back calculation of the raw SF-36 scores using the calculator:

Baseline (raw) for Rituxumab group: PF 44.8

Max Change (raw): PF 76.5

Note, I hope I didn't make any mistakes.

Thanks for posting this and the link to the calc; my spreadsheet calculates the same scores (for PF) as you. I remain baffled as to why Fluge et al didn't make more of these figures. Sure, they are a secondary outcome, and peak scores, but they are VASTLY better than for any other published trial. A couple of points:

1. Note the mean max % change is the mean of the % change for each individual patient - so for PF the mean max change might not be 76.5 (I don't think there's any way to tell from the given data).

2. We can't be certain the %age increase was increase in norm scores, though that's the most likely position; it could be they are increases in raw scores in which case max change for someone on the mean baseline score would 'only' be to 62.2. Hopefully the authors will confirm the basis for their calculations.

 

[Jenny]

Thanks for posting this and the link to the calc; my spreadsheet calculates the same scores (for PF) as you. I remain baffled as to why Fluge et al didn't make more of these figures. Sure, they are a secondary outcome, and peak scores, but they are VASTLY better than for any other published trial.

Could it be that they didn't make more of them because they are not familiar with the literature evaluating ME treatments (and how poor some of the outcomes are)?

Jenny

 

[Dolphin]

Could it be that they didn't make more of them because they are not familiar with the literature evaluating ME treatments (and how poor some of the outcomes are)?

Jenny

Also the primary outcome measure was at 3 months and it didn't go well for that date.

 

[Tia]

Here's the full article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2936947/pdf/keq159.pdf

I liked this paragraph: on p.1912, just above "Materials and methods": "Our finding clearly show that RA patients having EBV replication at baseline, not only cleared their EBV load, but responded significantly better to the RTX treatment and presented a longer lasting response than patients who do not have EBV replication in the bone marrow.

I honestly think that within CFS there are subsets of patients who have one or more pathogen making them sick. I'm guessing that Elene got well because the rituximab got rid of her chronic EBV infection: http://bergento.no/?page_id=3242&preview=true

But, rituximab doesn't work on all infections that may be behind CFS. So, not everyone gets the same amount of benefit from the drug. It is very exciting to me to see these articles.....

Best, Timaca

Good point! Have you seen this: http://www.ibtimes.com/articles/197...-any-viral-infection-mit-scientists-draco.htm ?

 

[Medman99]

One thing I have learned after having this illness for years- I will not allow anything to be injected into my body. No way, no how. That is a sure fire way to get worse!
Rituximab will turn out to be a red herring, just like XMRV. This illness is metabolic not infectious, imho. Google the work of Dr. Steven Rochlitz for the best theory I have heard yet on so-called "mystery illnesses".

 

[Dolphin]

One thing I have learned after having this illness for years- I will not allow anything to be injected into my body. No way, no how. That is a sure fire way to get worse!
Rituximab will turn out to be a red herring, just like XMRV. This illness is metabolic not infectious, imho. Google the work of Dr. Steven Rochlitz for the best theory I have heard yet on so-called "mystery illnesses".

One thing I've learned after being ill over 20 years (and severely affected over 17 years) is that non-pharmacologic treatment incl. supplements probably won't be enough to get me back on my feet. The choice then becomes a bit starker.

 

[Medman99]

One thing I've learned after being ill over 20 years (and severely affected over 17 years) is that non-pharmacologic treatment incl. supplements probably won't be enough to get me back on my feet. The choice then becomes a bit starker.

If you are as ill as you say, I would imagine you are taking some toxic pharmaceuticals? PS, I work in the medical field and don't discourage typical allopathic medicine, however, for those of us "hypersensitive" types, 99% of pharmaceutical offerings are toxic! YMMV, but I doubt it.

 

[Dolphin]

If you are as ill as you say, I would imagine you are taking some toxic pharmaceuticals?

I am as ill as I say I am and I was/am severely affected whether I was or was not taking a pharmaceutical.

And I'm fairly sure it was a non-pharmacological approach (exercise) which left me as ill as I am.

 

[Medman99]

I'm truly sorry for your troubles, my friend. I do not wish to criticize, only to inform of what has worked for me. Prior to opting out of the pharmaceutical path, I was going downhill rapidly. I am happy to report, that course was reversed/halted through various "alternative" treatments, including energy healing, some herbals/natural products, some vitamins& natural supplements, and most importantly, avoidance of chemicals, certain foods, and most importantly stress, whenever possible. I was never helped by any of the useless MD's that I saw and I am still working full time and carrying on a semi-normal life. I sincerely believe if I had stayed on the allopathic medicine course, I would be disabled right now.

 

[ukxmrv]

I really do feel jealous Medman when I read of people having such great sucess with alternative treatments. My story was that ME struck out of the blue as an acute onset disease and there was no involvement with pharmaceutical medicine.

My first instricts were to treat the symmptoms with alterntaive therapies (and many of the ones you mentioned). They didn't work and I ended up poorer and sometimes sicker due to them.

Today I am largely housebound and the few useful treatments that I have found include some conventional drugs. I'll still try alternative therapies and occassionally one may help me but not even the sniff of a cure or major breakthrough.

If you had been disabled right now it may be that Rituximab may have helped you in the same way it helped the patients in Norway. Some of us have to try many different things before we find something that works.

 

[shannah]

Rituximab will turn out to be a red herring, just like XMRV. This illness is metabolic not infectious, imho.".

Yours may be metabolic Medman but others here know that theirs is infectious.