New Fluge & Mella rituximab study: post MEDIA LINKS here

[Sasha]

@Blue or @DanME, can you help? I'd like to put the following into German so I can post it:

Please donate to CFS research charities!

Thank you for this article. It is vital for patients that more biomedical research is carried out into this devastating disease. Many have been sick for decades. Even children can get this disease.

I hope that your readers will donate to one of the medical charities, such as Charité Berlin’s EBV-related ME/CFS research (give via Lost Voices Stiftung) or the UK rituximab trial and B-cell research being funded by Invest in ME at www [dot] ukrituximabtrial [dot] org.

The work of Drs Fluge and Mella indicate that this is a treatable – even curable – disease. It affects over 300,000 Germans and over 17 million people worldwide.

Please help! This is a solvable problem and scientists are ready to start work as soon as they have the funds.​

If you're able to help, you might find it quickest to shove it through Google Translate first and then clean it up.

 

[Blue]

Hi Sasha, if you could give me some time, I will be happy to translate. I am not in the best shape right now, thanks to the 37 degrees today I will send you a PM when I got something.

 

[Sasha]

Hi Sasha, if you could give me some time, I will be happy to translate. I am not in the best shape right now, thanks to the 37 degrees today I will send you a PM when I got something.

Very sorry to hear that! Thanks for taking this on but please don't make yourself worse!

 

[Sasha]

Big thanks to @Blue who not only translated my message but made it culture-appropriate! Thank you, Blue!

 

[Sasha]

Excellent post on Spektrum already, which, translated, says:

[Thank you] that you talk about this important study and ME / CFS . The 300,000 affected in Dtl . very much hope that the Norwegian studies finally bring an improvement in the situation in Germany where the disease is either ignored or dismissed as psychological mood disorder , contrary to the state of research and the classification by the WHO as a neurological disease . The majority of patients can no longer work , 25 percent are bound even for years at home or bed and / or in need of care . Time to get things changed . Thank you again for your product!​

 

[jimells]

Why is he always the one that they interview

He is a "Founding Father" of the repugnant Science Media Centre, who remit is to protect the disability insurers. Lazy journalists ring up the SMC to get pre-digested stories.

 

[jimells]

The vague statements about holistic treatments, or mind and body being inseparable, etc. are really just shorthand for saying "your mind is causing disease and we want to treat it with CBT".

... and because it's a Magic Mind disease, no disability benefits required."

 

[snowathlete]

Couple of thoughts about Simon Wessley's comment on the latest Rituximab results:

- As predicted already, we are seeing the shuffling of position here. As this and other biomedical evidence increases, the long held position of Wessley and his colleagues becomes more and more untenable. Rather than admit mistakes we will just see them shuffle over insidiously and only us will even notice. They will claim they have always called for such research and considered the disease as "real" and so on.

Of course, we have a record stretching back decades on what Simon Wesley and others have actually said and done, but the reality is that people won't investigate that, they will just go with what is currently being said by these people. It also ignores the reality that these are real people who can speak to and influence other current people. The fact the Internet has the facts of the matter doesn't really mean much in real terms, I don't think.
- I also think his comments are disingenuous. By saying that the results justify a phase III trial (something patients are keen for; indeed if not for patients then the Norwegian phase III wouldn't have even begun) he isn't helping us, he is doing what he can to set the bar high for what is required before Rituximab is an approved therapy. I expect he will say more on this in the future -- maybe in public but certainly behind closed doors -- about how it is an expensive drug, a risky drug, and even that we mustn't fail patients by taking shortcuts. Lots more study is needed, yet. In the meantime, he will say, the only "proven" therapy is GET and CBT, as per PACE.
- by having something seemingly positive to say about this study he is extending his position as an authority on MECFS studies - even ones like this where the area of science is completely outside of his specialism, where truely he is no expert at all. It ensures he will be asked for comments when the next biomedical study comes out, allowing him to influence those too.

I am pleased to see other media outlets covering this properly and each one that does so without quoting Wessley et al is of particular benefit to us.

 

[Sasha]

Another good comment on the Spektrum piece (which I've Google Translated):

2. requires research and medical care centers for ME / CFS strongly in Germany
07.02.2015, Svenja
Thank you for this good article!

To show what can mean a clear response to rituximab for ME / CFS patients, here a case study, which was presented at the International ME conference in London 2012.

Output level: the patient was mostly bedridden with severe cognitive problems and pain, light / noise sensitive, Actometerdaten showed 23 hours and 20 min complete rest day and an average of 850 steps per day.

After responding to rituximab she works 100%, long walks, swimming, more than 10,000 steps a day, no pain, rich social life, no cognitive problems more completed university exams, self-assessment function level 90%, previously 10%

The example shows how extremely restrictive is this disease and how inappropriate the trivializing name 'fatigue syndrome'. There are also patients who are more severely affected significantly.

As in Norway should be taken in Germany ME / CFS as a last neuroimmunological disease seriously, established health care centers and initiated and promoted research!

At the moment there is only a small immunodeficiency clinic at the Charité that the disease has taken. You can support their research here with donations: http://www.lost-voices-stiftung.org/crowdfunding-forschung-me-cfs/wie-kann-ich-spenden/

 

[Cheshire]

French public television network wrote an article:
http://www.francetvinfo.fr/sante/de...our-soulager-la-fatigue-chronique_980167.html

As usual, they use indifferently the terms CF and CFS, but the whole article is a good report of the trial. (ME is nearly never used in France)

 

[Sasha]

French public television network wrote an article:
http://www.francetvinfo.fr/sante/de...our-soulager-la-fatigue-chronique_980167.html

As usual, they use indifferently the terms CF and CFS, but the whole article is a good report of the trial. (ME is nearly never used in France)

Nice find, and the article takes comments, so get cracking, French speakers!

There's a French biomedical research charity whose name we can drop:

Association Française du Syndrome de Fatigue Chronique

http://www.asso-sfc.org/

 

[Cheshire]

Nice find, and the article takes comments, so get cracking, French speakers!

There's a French biomedical research charity whose name we can drop:

Association Française du Syndrome de Fatigue Chronique

http://www.asso-sfc.org/

I wouldn't call the Association Française du syndrome de Fatigue Chronique a biomedical research charity.
It's supposed to be a patient organisation, but is lead by its scientific and unchallenged "scientific board". It was all pro CBT/GET and is slooooowly turning to a more biomedical model. (there are different trends that they try to synthetize in weird and incoherent theories refering to both biomedical research and BPS model).

 

[Sasha]

Just posted on that French one - badly, probably - and think it's in moderation.

 

[Sasha]

I wouldn't call the Association Française du syndrome de Fatigue Chronique a biomedical research charity.
It's supposed to be a patient organisation, but is lead by its scientific and unchallenged "scientific board". It was all pro CBT/GET and is slooooowly turning to a more biomedical model. (there are different trends that they try to synthetize in weird and incoherent theories refering to both biomedical research and BPS model).

Oh . Just managed to edit my second attempt at a post but if the first one goes through, people might see it and give them some money. Let's hope they're moving faster towards the biomedical stuff!

I'll edit my list of research charities.

 

[Sasha]

Jorgen Jelstad (excellent Norwegian ME blogger) has posted:

http://debortgjemte.com/2015/07/02/...r-etter-behandlingsstart-med-immunmedikament/

I won't add him to the masterlist, though - I'm keeping that so we can see mainstream media stories.

 

[Aurator]

The story is now in a German science online mag called Spektrum:

http://www.spektrum.de/news/medikament-bringt-erschoepfungssyndrom-zum-verschwinden/1353694


Anybody sprecht Deutsch?

Here's my English translation:

Drug makes CFS disappear.
A cancer drug shows amazing efficacy against CFS.
In a small study it made two thirds of patients symptom-free.

Rituximab was originally developed for the treatment of lymphomas. Now the drug has shown a new effectiveness against CFS. This at least is what has emerged from a small clinical study, which researchers in Haukeland-Universitätsklinik in Bergen have carried out. 18 out of 28 patients showed marked improvements in the typical symptoms. Øystein Fluge and Olav Mella's team has been testing the drug since 2004. On one occasion they noticed by chance that the cancer drug appeared to eliminate the symptoms of patients with CFS. According to their most recent findings, the improvements persisted for years: of the 18 patients in the present study who responded to the treatment, 11 were still symptom-free 3 years later, and some were symptom-free even 5 years later, according to Fluge. In contrast to a smaller previous study the present sudy, which has been running since 2011, was not placebo-controlled, and not blinded.

At the beginning of the treatment patients were given 2 Rituximab infusions at an interval of 2 weeks. These were then supplemented with top-up doses at 3, 6, 10 and 15 months. The scientists report that no serious side effects were apparent.The Norwegian scientists have already begun a larger trial with 150 patients.

An antibody against harmful antibodies?

With this drug what we are dealing with is an antibody that removes a certain kind of immune cells: B-cells. The fact that it also works against CFS suggests that the ever more mysterious cause of the disease is to be sought in an immune reaction. According to the two researchers it could be the case that with the CFS patients certain antibodies that are produced in the fight against an infection that is long over and done with continue to be produced, and inhibit, for example, blood supply to the muscles. According to this explanation, the elimination of B-cells would prevent the production of these antibodies and account for a cessation of symptoms.

What exactly the underlying explanation is for the disease, which according to the suggestion of an American institute of medicine would be better described as SEID, is still open to debate. The uncertainty of its status means an additional burden for patients, who often face the accusation that their illness is merely feigned.

Should Rituximab prove effective in further studies, it could not only provide the long-awaited treatment option, but also furnish crucial clues about the origin of CFS.

 

[alex3619]

He can't openly say it's psychosomatic, but I bet he will continue to insist that there are psychosocial components to CFS that must be treated with psychotherapy.

Decades after the rest of the world accepted MS as physical it is still being treated by some as partially psychosomatic. Given the recent trend to claim that many disorders are physical but have a psychosomatic comorbid disorder, a dual diagnosis, they are positioned to keep going.

Rituximab results give us something to work with as advocates, but advocacy will still be required.

 

[alex3619]

Here is something that is an open secret in psychiatry. Very few psychiatric diagnoses are stable, have cures, or are even established disease/disorder states. They are all manufactured categories. Psychiatry is the most problematic of all medical disciplines, and I would argue that most psychiatry does not deserve to be considered medicine but should be considered alternative medicine. It does not belong in a discipline that needs to be based on science.

So psychiatry has a history of diagnoses disappearing, morphing, blending and separating from each other, and, yes, becoming non psychiatric. So it will not be a surprise to any well informed psychiatrist that a diagnosis is changed or dropped. What most find surprising is how diagnostic categories are created.

Based mostly on subjective interpretation of clinical history and studies using subjective methods, small panels decide amongst themselves what is what, and, hey presto, we have a new or revised or dropped diagnostic category.

So do they test these for scientific validity? Nope. How would they do that? Most of this is subjective interpretation. Sure they can use statistics to back them up, but that is just numbers if not properly used.

But, I hear some saying, the APA for example does extensive validity testing! They sure do. They test for diagnostic reproducibility. That is, how often psychs will get the new diagnoses consistently the same. Note this is about repeatability of diagnoses, not scientific validity of diagnosis. If anyone doubts me, please show me a scientific paper, with objective markers, on a range of axis 1 disorders in DSM5, that validates these disorders as discrete clinical entities.

Psychiatry is trying to become more scientific. So far its largely failing. Psychology at least tries to get things right. Sociologists are at least aware of the risks in their methodologies and try to make allowances. Psychiatry however embraces concepts like lying to the patient if they think its in the patient's interest. They inflate, conflate and outright lie. There is much in psychiatry that is appropriate, or effective (at management) and in some cases scientific, but much of it deserves the term devised in the 1970s - psychobabble.

It will be interesting to see how psychiatry embraces the evolving science on ME and CFS. So far they have not done well. From comments over the years a number of advocates have suspected they are repositioning themselves. They could see what was coming. Yet, rather than discuss diagnostic and research uncertainty (unless its other people's research) they kept insisting they were right. So there!

I find it very interesting that it took two oncologists who appear to have what I would call the spirit of inquiry, to make a big leap in ME and CFS treatment and understanding.

 

[Sasha]

Interesting topic, guys, but can we stick to media links & stories, please, or we'll go down the rabbit hole!

 

[Sasha]

11,000 'likes' on the New Scientist story, BTW! 270 tweets, 1,900 Google+ 'shares'...

http://www.newscientist.com/article...ve-chronic-fatigue-syndrome.html#.VZZRrBtVikq