Rch4

[originalthought]

Hi Chas,
Thanks for your best wishes for my research. Sorry there is a misunderstanding. I am not smart enough to be a scientist or researcher! Just a retired GP dealing with this awful condition.

My “research” only went so far as to learn that Riluzole did nothing to slow the progression and RCH4 definitely does in my case. My concern is how long the RCH4 charity, who supply it for free, will last as they have no funding.
We all know that MND is a most heterogeneous condition so outcomes will vary a lot. The charity http://www.rch4.com say it is ineffective in 16% of the treated population. However I came on this interesting table from PLM and also see that it has the highest votes on ALS Untangled (our American cousins call it ALS).
PLM Efficacy Table.png

To address your point about the ALSFRS-R score. You are absolutely right that it is subjective, but it has been validated as the gold standard for measuring progression in the absence of any biomarker being available. As I posted before, what the actual score is for each patient is not in fact relevant. What matters is the CHANGE IN THE SCORE OVER TIME.

Even if an accurate objective protocol or biomarker were developed tomorrow, it would still be academic as there is no “cure”. All an accurate biomarker would do is enable earlier definite diagnosis. Sadly, that’s little help to us.

[noow17]

Oct 2019.png

Mums latest ALSFRS-R chart. She's still doing really well.

[Terry]

Hi all,

Neater Robo-arms are out of stock - sadly for me it will be a 4~5 week wait.

Chas

Hi Chas;

Any new on the arms.

Love Terry

[Terry]

Hi Noow17,

Pleased to hear that your mum is still getting the drug OK.

I was led to believe that Dobett couldn't get it and that was the reason for his anger.

Love Terry

[Sportingmac]

Hi Chas;

Any new on the arms.

Love Terry

Ongoing saga with NHS. NHS say NO. MNDA need reason for no before offering assistance. Have written to CCG asking for their help. Also have investigation by Neurologist in Rehab Team into reasons too.

Meantime I now have a GridPad - Yeahhhhh Robo-Arms would be good to reach the screen. Eyegaze if no robo-arms.

[Ellie]

ALSUntangled has published their review of RCH4.

https://www.tandfonline.com/doi/full...1.2019.1675282

[Terry]

Thanks for the link Ellie;

Their report is very short, probably due to them not obtaining much if any info from Rch4.

The report does say:- The website does mention some side effects in patients on RCH4 that
were later determined to be due to “counterfeit edaravone” (6). Exactly what these side effects
were, or how this determination of causality was made are not specified. Of concern, one website
mentions 2 cases of anaphylaxis on RCH4, one of whom died

And the conclusion:- Conclusion
RCH4 is an unlicensed, unapproved product
reported to “probably slow the progression of your
ALS” (6) on a website. The only peer reviewed
publication we found on this product is a single
abstract which was never presented at a meeting.
We have been unable to determine RCH4’s structure or chemical class, and its purported mechanism is one that has never been shown to be useful
in treating PALS before. We have been unable to
independently verify RCH4’s reported efficacy or
even safety. Thus, at this time, we cannot advise
PALS to use this product. We hope the proponents of RCH4 will someday present more useful
information about their product at a scientific
meeting or in a peer reviewed publication.
We believe that regulatory oversight is important for optimizing patient safety on experimental
drugs, and that independent peer review and replication are fundamentals of good science. Caution
should be exercised around any product being
developed and in clinical use without these safeguards and fundamentals in place.

It appears that they've found out pretty much what we know and explain a few other things. So they're in the dark as much as we are.

I hope I scanned it correctly.

Love Terry

[Sportingmac]

Thanks Terry,

Supports my research results too. Hopefully this document (thanks Ellie) will give pause for thought.

Kind regards

Chas

[noow17]

Mum continues .to do well on RCH4. Her latest ALSFRS-R charts
Nov 19.png
Nov 2019.png

[originalthought]

Speaking as a retired GP and a user of RCH4 I am qualified to comment on the ALS Untangled review.

I think that it is unfortunate that Terry has been selective in copying (above) portions of the review some of which are totally untrue. But she (?) cannot be expected to know the unsavoury background conduct of the MND establishment elite. Therefore the review appears plausible to Terry. And that is the problem, it appears plausible to all PALS.

It is clearly not an objective document but it is biased in the extreme, and in most part, demonstrably untrue.

The RCH4 charity response is revealing in that it lifts the cloak off the vested interests, back stabbing and I am sad to say, the egocentric medical profession involved in research. This review is a disgrace and an embarrassment to my profession.
These are the people who destroyed the charity by untruthfully labelling them a scam thus depriving PALS who want to try RCH4 the opportunity of doing so.

The detailed comprehensive response from the charity who supplies it free of charge should be studied very carefully as it is a revelation as to what happens to the millions given by PALS and the public for MND research. One may check for oneself the accuracy of every item on the RCH4 people`s reply.

Study this and then come to your own conclusion as to the motives or fairness of the authors of the so-called review.
It really is worth studying.
http://www.als-new-drug.com/alsuntangled-review

This cartoon from the response caught my eye. It says it all about those involved in MND research.
The caption says
We don`t want to believe you because we get paid to continue what we are doing
NIH.png