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RCH-4
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The ALSUntangled Group evaluated RCH4 and published a paper in the journal of Amyotrophic Lateral Sclerosis and Frontotemporal Dementia, October 10, 2019.
https://www.tandfonline.com/doi/full/10.1080/21678421.2019.1675282
This article provides insight into the question of why RCH4 has not gained FDA approval and is not available on the market.
If you have data showing that RCH4 has worked well to slow your mother’s progression or even restore strength and facility, you might want to consider sharing that data with Dr. Richard Bedlack, Duke ALS Clinic.
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This review/article is methodologically flawed and based on completely insufficient data which Bedlack received from the 3rd party. It reads like more like act of personal vengeance. After labelling rch4 as SCAM , attempted manipulation of public voting in ALSu ranking list, it is another attempt to bury it instead of promoting a fast, fair and scientifically sound trial.
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Tomasz,
I must remind you to refrain from inflammatory comments or accusations. Discussion should be helpful to members and based on facts.
Here are the ALS Forum guidelines: https://alsnewstoday.com/forums/about-our-forums/
Thank you
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In respectful reply to Steve and Tomasz, it appears to me that the group of neurologists who make up the reviewers of ALSUntangled have set out clear criteria for standard objective evaluation of ALS treatment protocols. In addition, the names of all neurologists belonging to the review group are included at the end of each review. An interested reader can look up any name on the list to find the credentials of that reviewer.
By contrast the RCH4 website does not list the names or location of the developers of the drug: “The RCH4 Research Charity (http://www.als-new-drug.com), is an informal charitable organization of retired doctors and scientists with lifetimes of experience in membrane osmosis and immunity research. ”
I searched for the names of the “retired doctors and scientists” on the web but was unable to find them. The RCH4 site mentions that funding is needed for Phase II and III trials, but does not mention when or where Phase I was conducted, the location of the trial or the results.
The site also claims that negative reviews from ALSUntangled caused the funding for the charity “to collapse.” Why, if there were sufficient, credible data from pALS using RCH4 available to the funders for their review, would they have withdrawn their support? I note, also, that PLM lists 27 patients who have listed RCH4 as highly or moderately effective. Was this data, which appears worthy of close review, analyzed by the “retired doctors and scientists” and made available to the funders of the charity?
I am glad to hear that Tomasz feels that RCH4 has helped him and that Steve feels it has helped his mother. Perhaps you may wish to have your respective neurologists contact Dr. Bedlack with specific data/evidence indicating that RCH4 has been a significant factor in slowing progression.
I wish you continued good results with RCH4.
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I agree with Diana: why demand Dr. Bedlack to conduct a trial, when the makers of RCH-4 haven’t done any themselves.
Tomasz’s most recent comment does not read like something that comes from a university professor.
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Good morningDagmar,
I do not know what is your profession, I know however that through 4 decades of my research career I reviewed and refused tens of papers for flawed methodology. I never saw a scientific paper that discusses other topics (like in review 51 by ALS untangled party) but experimental data, their discussion and conclusions. Several of my manuscripts were refused for the insufficient evidence to support conclusions and it was perfectly a part of the research routine. Please be so kind and don’t remind me what ethical behavior of a academic researcher should be . Thank you for maintaining your impartiality.
Karl – thank you for your friendly remarks.
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In addition to what’s in the ALSUntangled review, here is what makes me skeptical about RCH4: if you’re developing a treatment for ALS, you’re either doing it to make money, or you’re doing it because you’re passionate about solving ALS (or some combination of the two). In either case, your objective is to get your treatment in the hands of as many doctors as possible so they can prescribe it to their patients. The way you do that is through clinical trials, peer-reviewed journal publications, and ultimately, FDA/regulatory approval. They claim they don’t have the funding to conduct clinical trials-which is plausible-but I find it exceedingly hard to believe that the medical community as a whole would choose not to investigate further if there was even a slim chance RCH4 is effective.
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Tomasz,
I sincerely apologize for my remark; it was not made or meant as a critique of you or your profession, but a weak attempt on my part at reigning in the current discussion — to bring the focus back to comments that are of help to our members and/or shares information based on facts.
Let’s agree to disagree on “why” RCH-4 is not receiving support from established ALS organizations.
Let’s all agree to return the discussion to patient experiences with RCH-4.
Thank you.
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@Owen. I looked at the various websites mentioned in some of the posts, and I agree with your comments. I believe that if there was any real scientific evidence that one of the research companies would be willing to make financial and time investments to further research and trials. I think that the professionals in the medical field, specifically ones focusing on ALS, will continue to seek out effective treatments and help pALS and others steer clear protocols that are not supported by data and research.
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Also, we as PALS need to realize that what is good for one of us is not good for the other. This applies to exercise, food, supplements and even medication. To judge a fellow PALS for what works from their experiences but doesn’t line up with your own regiment is short sided and not helping any of us.
For me, I eat 2,000 to 4,000 calories daily and do nothing that could be considered exercise. And….since April 2018 when I started RCH4 I’ve maintained weight just great.
We cannot continue to purposely discredit each other. We need to support each other.
It’s not like someone who has no connection to ALS is talking up RCH4, it’s people diagnosed with ALS. This is an important point.
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Please be aware even before I started on RCH4, any exertion I did that could remotely be labeled as exercise caused me progression. Know of several other PALS with the same issue. Now, my neurologist agrees and the only physical activity I do is stretching with my wife’s assistance.
If I were to tell another PALS on what not to do, exercise is one of those things as it is safe to tell PALS to not exert themselves using exercise, it is NOT safe to tell PALS to exercise.
Concerning the ALSU review of RCH4, I feel it was done to remove RCH4 from the vote on ALSU. Proof is the lack of details. After reviewing several other reviews from ALSU, NOT A SINGLE ONE closely resembles the RCH4 as far as lack of details. In fact there are several treatments still allowed to be voted on because ALSU doesnt have details. The RCH4 review was done by ALSU to remove RCH4 from the voting list, very fraudulent and makes us question the accuracy of their other reviews.
Please read the RCH4 rebuttal here:
https://als-new-drug.com/alsuntangled-review
Moderators I ask you to keep an open mind and listen to those of us using RCH4. Almost every forum has removed us and silenced us for simply providing our personal accounts. In fact we want nothing more than for all PALS to be using RCH4 because we personally know it works as an effective treatment, safely.
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Since I started the thread on RCH4 in May, 2019, I have followed the comments on my post with great interest.
I would like to emphasize the fact that I have complete respect for the comments of Forum members who have expressed assertions that RCH4 has helped to slow their ALS progression or that of a family member. I do not challenge those assertions because I am not a neurologist with direct experience of the disease progression of these members or their family members. I am an ALS patient who is trying to educate herself about ALS therapies.
I would like to note once again that what is striking to me is the absence of information on the RCH4 website about the developers of RCH4 and the location of the company which develops and distributes it. This appears to be a stark and concerning departure from the standard disclosure practices of pharmaceutical companies, hospitals and universities which engage in drug research and development.
Here is a link to an article listing drugs currently undergoing trials:
https://alsnewstoday.com/experimental-treatments-als/
A link is provided for all of the drugs listed. One link leads to a research paper and one link seems to be faulty. However, all of the other links lead to professionally formatted websites of each drug’s developer. All of these websites contain links to names and photos of scientists, research leaders and boards of directors.
The same kind of information, including results from trials, should made readily available from the developers of RCH4. The fact that it is not raises grave doubts in my mind about the product’s efficacy and safety for use. I feel that I have found an answer to the question I posted here last May. My conclusion: there is a lack of convincing data to support my personal pursuit of RCH4.
Thank you.
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Was told yesterday that a PALS using RCH4 was removed from this forum. Is this factual?
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I appreciate all the information provided on this thread. I was told by physical therapist and neurologist to conserve my energy for things I want to do. suggestion included using wheelchair to go down the hall to the restroom rather than walking. My ALS has progressed to the point that I seldom walk more than 100 steps in a day – maybe as few as 50 some days. I strain to rise up and walk or move to the wheelchair each morning. I am no longer able to lift my laptop because it is too heavy to handle. Seems everyone I read about is so different, it is as if we all have a different disease. I eat well and have gained back 20 of the 55 pounds I lost while going through initial diagnoses. I do stretch some but don’t “exercise” as such. a few years ago I was training for a half marathon. Now I only dream of a slowed progression. Wish there was clear cut info on RCH-4. At this point (one year into ALS), I am certainly ready to try something other than Rilutek which made me sick.
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Hi Dagmar,
I’m a nutritionist and I know more about ALS than most neurologists. The nutritionist in the clinic, if there is one at all, knows very little about ALS. The advice they are permitted to give is very limited too. Unless there is highly specialized clinic where they develop individual holistic treatment approaches, I would not expect much, but such clinic probably doesn’t exist jet anyway.
Physical exercise can be very dangerous when it causes stress, as well as too little activity.
Medically-trained physical therapists often treat pALS like stroke patients, which is totally wrong.
henry
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Henry, agree. When I was first diagnosed, I exercised and although it wasnt to the point of real exertion, my progression sped up. Stopped exercising and focused on stretching and progression slowed. Then when I started RCH4 my progression really slowed, almost at a halt now.
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Hello Henry,
With all due respect for you being a trained nutritionist, which gives you leeway to comment on nutritional issues — you however are not an expert in physical fitness/therapy. So, I disagree with your broad statements about exercise — especially pertaining to ALS.Yes, strenuous exercise is stressful to the body (and mind) — however, very few people with ALS can accomplish strenuous exercise. Much less, even accomplish moderate exercise. Newly diagnosed patients could misinterpret your statement as “all exercise is stressful” — which it isn’t.
Nutritionists in ALS Clinics are “trained in” and study ALS. They give good advice; tailoring to each patient’s needs and are willing to look into alternative suggestions. Yes, they vary in personality and approach — but I disagree with the blanket statement that they know very little about ALS.
The same goes for your judgement of physical therapists. Mine do not treat me like a stroke patient. They encourage me to exercise and celebrate my improvements.
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Dagmar, what is your definition of exercise?
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WierdTim,
My definition of exercise is: any physical movement or activity done with the intention of maintaining or improving the body’s health and fitness.
What is your definition?
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The dictionary states:
activity requiring physical effort, carried out to sustain or improve health and fitness
The issue is, any exertion has caused progression with me and many others. I am fortunate enough to still have some movement of my limbs and my wife helps me stretch to maintain flexibility, not to build strength.
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I think we have a limited vocabulary to describe this new situation so it is difficult to express our thoughts.
In my opinion Dagmar is right to talk about little exercises like learning new tricks to move the body and adapting to the new ALS life. What is probably important is the complexity of the activity and not its energy consumption.
The reason I see is that complex activities like dancing or swimming are actually involving the upper neurons. Lower motor neurons are involved in more basic biological functions involving speed and strength. Muscles use a lot of energy and the energy supply is limited in ALS so it must not be wasted.
If there is a way to preserve upper neurons by activities such as what Dagmar suggests, then it is a sort of breakthrough in ALS. Dagmar IMO you should try to think more about this, how to involve upper motor neurons with complex activities without using much energy and adapted to limited motor capacity, all would benefit.
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Since this discussion is focusing more on the issues of exercise, and moving away from RCH-4 — I have initiated a new topic in this forum to address exercise: A Deep Dive into the Issues of ‘ALS and Exercise.’
Here is the link to join that discussion: https://alsnewstoday.com/forums/forums/topic/a-deep-dive-into-the-issues-of-als-and-exercise/#post-14125
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I was diagnosed 6 months ago and would really like to try RCH4. I asked my doctor and he said he wasn’t comfortable giving his approval. Just curious if anyone else has had this issue and what they did to get around it.
My progression is moving quickly and I am anxious to get going on the RCH4.
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Sheryl, once I provided the information and patient experiences from Patients Like Me to my nuerologist, she wrote a letter stating her and the hospital aren’t liable and the rest is history.
As far as availability, please read this from the charity and follow the links as they appear. https://www.als-new-drug.com/drug-availability-cost
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Hi all,
It’s been a while since I reported in on this forum but I’m happy to report my wife’s progression is still halted and we have just gone past 4 years on RCH4 which is awesome when my wife’s two triplet sisters and mother all died within 18 months of onset of this disease. Ness is leading a reasonably normal life but has lost some strength and stamina in her legs, but this has not got any worse in the last couple of years. I see a few comments on exercise on here and I just wanted to add our experience. We have found that if you exert too much, it seems that remaining muscles get over exerted and actually progresses your disease further in those muscle groups. We went on a holiday to Sydney a couple of years ago and Ness ended up doing loads of walking. We found that at night she really suffered from cramps and her legs weakened over the next couple of weeks and she never got that strength back. We now manage any exercise very carefully and have had no more progression (obviously this is also helped by RCH4 as well). Since doing this Ness has not had any cramps or twitches. Diet is also very important and we have found as advised by the charity that sends us the RCH4, that the high carbohydrate foods are good for you. Dieting and eating salads does not go good with ALS – you must battle loosing weight. Initially we were asked if Ness is vegetarian as well, because allegedly this also does not sit well with ALS and surviving as well. Now this is just advice from our RCH4 supplier, but we have found by following the advice, my wife is still on the planet so I’m very thankful
[img]https://i.ibb.co/LRkY63X/Jan-2020.png[/img]
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Dagmar,
What my wife have noticed over the last 4 years is that if overexcertion in any kind of exercise is done, she will then find that she suffers cramps that night and can notice a degrade in strength in that area over the following few weeks. We have had this happen several times. We have now learnt to take life as easy as possible and it really helps. Ness still gets around and so keeps active but we just avoid over excertion. My wife is not the best eater and so my be linked to her body just not getting the instant energy required when aready depleted muscles need the extra energy to compenate. One thing that seems very common is that most people who activate with ALS are sporty people who train. The charity who supplies us with RCH4 has always said to us is that you rarely find a large person come down with ALS which seems very true (my wife was a runner)
ANyway, I just wanted to update on Nessy’s progression. We are up to 4.5 years on RCH4 and the progression is still halted which is great news for us. We are convinced that the drug is doing a great job for us, especially when compaired to the rest of her family who all passed away with 18 months of on-set. I’ll try and upload her ALSFR-S chart below.
[img]https://i.ibb.co/G3mVCq2/Ness062020.jpg[/img]
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