Announcement

Collapse
No announcement yet.

Rch4

Collapse
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Yes Chas;

    But you would have been playing football in the world Cup if you were taking Rch4.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

    Comment


      Hi Terry,

      Good point Terry - it might have been a possibility - but only if I was picked by JC himself.

      Regards

      Chas

      Comment


        Hi Chas;

        I was on the selection list but had to withdraw as I needed a ingrowing toe opp, the same thing ruined my rugby career when I was 14.

        Love Terry
        TB once said that "The forum is still the best source for friendship and information."

        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

        Comment


          Originally posted by Sportingmac View Post
          Hi Don - you might like to take look at this piece of research - objective testing now a possibility.

          http://jnnp.bmj.com/content/jnnp/ear...16744.full.pdf

          Let me know what you think.


          Regards

          Chas
          Chas, thanks for your link.
          As it so happens, I came on it late last year. It is a prospective study done in the UK and represents an immense amount of work by a respected institution.
          However, it has to be observed that the cohort was too underpowered to provide conclusive evidence of a reliable biomarker.
          I could be wrong, but without looking it up there were probably 20 such studies over the past 10 years and nothing conclusive was demonstrated in any of them.
          This underlines the heterogeneous nature of ALS. There are far too many variables, probable mimics, and immense variability in the natural history of the condition.
          A biomarker is unfortunately not a possibility at this time. If or when one is found, it will not help us. But it may help earlier evaluation of novel drugs for the condition. Another point, some people do not want earlier confirmation of bad news but some do.

          I must declare a potential conflict of interest. I was with a major Pharma in drug development - at the sharp end of clinical intervention with real patients. We used to look down on passive prospective "studies" that did not (usually) much involve ethics or Hippocratic Oath considerations.
          So maybe I am the wrong person to ask for an unbiased opinion.
          D

          Comment


            Hi Don,

            As with most MND studies/research the baseline numbers in the cohort starts out meaningfully (can I say that?) but tends to fall off quite dramatically as time advances - due in the main to poor mobility and the lack of mobile testing units. I was one test subjects that did make it to the end of the two pieces of research - and for me the results were revealing. The number of neurones at the start of the testing on my arm/thumb was 250 and a particular size - by the end of the study the number had fallen to around 120 but the neurone size had increased ( to compensate for numbers). The MRI scans were always a revelation - even found some small kidney stones - with muscle wastage evident.

            The research was conducted across Europe - the MRI scans led by a German professor and the EMG testing by an Italian professor. The research has been moved up a level and a new cohort has been selected - this time with a bit more invasive testing - the last piece was conducted on a non-invasive basis.

            I have some hope that this piece of research can/will be used to test objectively any new treatments. Likely in the first few years with AFRS scoring running in parallel.

            You make a very valid point - "...This underlines the heterogeneous nature of ALS. There are far too many variables, probable mimics, and immense variability in the natural history of the condition...." - and that for me is an issue regarding the various drugs/treatments that are in circulation that are used on non MND patients - and the results would therefore be different.

            Th best cure I hope for at the moment is a 'mis-diagnosis' and that it is something treatable - but alas that is not the case.

            I have no issue with anyone trying whatever treatment/drug in the hope of halting or curing ALS/MND - but I would like to see an MND patient 'standing up and walking' and the cause being scientifically verifiable. Th placebo effect works for a while .....

            Kind regards - and good luck

            Chas

            Comment


              Greetings, per my monthly report to the charity my third month using RCH4 has showed no measurable progress. Surely hope others can get ahold of it to experience the results many of us have experienced with no side effects. Take care.

              Comment


                Originally posted by WeirdTim View Post
                Surely hope others can get ahold of it to experience the results many of us have experienced with no side effects.
                Hmmmm - from RC Charity Group .....

                .................................................. .............
                Thank you for the copy of the letter from from Dr. XXX (Senior Kings Consultant after last vist) which we have studied with interest.

                Whereas you are on Riluzole which is an MND medication, and exhibit neurodegenerative symptoms in your left arm, this does not accord with the El Escorial criteria, i.e., this does not mean that you have MND. Perhaps possible, but there is no confirmation of diagnosis.

                Your neurologist must come up with a definite diagnosis of Motor Neuron Disease to enable us to try to help you.

                At this time, he cannot do this due to many factors, e.g., there is no measurable progression in defined six month periods, there is no spread of the symptoms to other limbs, in fact, there could be a few possible issues other than MND.

                We suggest that you see how you are in 12 months time and if any change, request repeat tests which comply with the El Escoria criteria.

                In passing, we note that you are very active. Be careful. Try to conserve energy, try to gain weight and avoid stress - which is very counter productive.
                ........................................

                What is "El Escorial criteria" ?

                Re "come up with a definite diagnosis of Motor Neuron Disease" he has excluded all else and I exhibit typical symptoms - my ALS-FRS score per that letter is 41

                Re "....you are very active. Be careful. Try to conserve energy, try to gain weight and avoid stress" - "active" keeps me flexible - cycling and yoga.

                And "gain weight"!

                I'm 15 stone at 5' 8" and I have put on a stone a year since my diagnosis and I'm trying to get it off - it may be good for my motor neurone disease but it is certainly bad for my heart.

                Who are these people?
                Warmly


                Andy

                ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                "Things turn out the best for people who make the best of the way things turn out"

                Comment


                  Hi Andy,

                  El Escorial criteria are used to determine the diagnosis of ALS - it's how the possible, probable or definite diagnosis of ALS is determined.

                  I seem to remember your diagnosis is 'Possible ALS', which is consistent with your symptoms as described above.

                  Clinical Trials use the El Escorial criteria to determine eligibility, and largely exclude those with a 'Possible ALS' diagnosis and often 'Probable ALS' too. For that reason, it doesn't really surprise me that the Group limit their product to 'Definite' people only .

                  I'm sorry you don't qualify.

                  Love Ellie.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    Thank you Ellie

                    Originally posted by Ellie View Post
                    El Escorial criteria are used to determine the diagnosis of ALS - it's how the possible, probable or definite diagnosis of ALS is determined.
                    Ah! My consultant talked about "possible probable actual" and calls me "possible" but I was not aware this was part of any formal diagnostic listing

                    Originally posted by Ellie View Post
                    I seem to remember your diagnosis is 'Possible ALS', which is consistent with your symptoms as described above
                    And that is certainly why I'm here - if I hadn't been told I have possible MND I would not have gone to all the trouble I've gone to find out about it - The RCH4 lot are saying I do not have a diagnosis.

                    Originally posted by Ellie View Post
                    Clinical Trials use the El Escorial criteria to determine eligibility, and largely exclude those with a 'Possible ALS' diagnosis and often 'Probable ALS' too. For that reason, it doesn't really surprise me that the Group limit their product to 'Definite' people only
                    Ah! Thank you also for the explanation.

                    That makes some sense, and not suggesting that this is your personal view, but surely it is better to retard the disease in its early stages rather than simply prolong life when the disease is advanced to a greater extent?

                    This also reflects something I've been thinking about in that the research I've seen reported seems to generally be aimed at slowing or indeed even trying to stop the advance of the symptoms rather than repair existing damage - is that fair?

                    Finally, are the RCH4 people in this forum?

                    I ask because I just had an email to my personal address copying in the posting I made above and commenting on it again inaccurately.

                    It also accuses me of making an angry response above, and I do not consider my response above angry - do you?

                    If they really want to see an angry response from me I'm sure I could provide one - I have plenty of anger left over after my diagnosis to use for a good cause :-)

                    Best to all
                    Warmly


                    Andy

                    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                    "Things turn out the best for people who make the best of the way things turn out"

                    Comment


                      Andy, it was I who copied your very unfair posts, critical of the RCH4 charity to them. They have given me courtesy, information and paid for my treatment for the past three years which has stopped my decline. Before that nothing worked for me.

                      Ellie (above) is right. How can they supply anyone with costly medication when there is no conformed diagnosis. Please contain your anger as it is counter productive for you.

                      I and others owe them a great debt of gratitude.
                      It is utterly unacceptable to criticize a charity who give so much to helping others.
                      Don

                      Comment


                        May I ask one thing I am curious about? Why most of you members who claim to have been helped by the Rch4 do not give your location?
                        I am not asking this with any bad intention. We too have filled the Rch4 application form and submitted. If we know where the people those who benefited from this lives, that will give us more confidence certainly.

                        Comment


                          Not sure Jay besides privacy. For the longest time I didnt have a location. Then after being called out on another forum as a troll, I added it.

                          Comment


                            Dear Don

                            Originally posted by Doblett View Post
                            Andy, it was I who copied your very unfair posts, critical of the RCH4 charity to them.
                            I need to check the privacy policies of this forum but, common courtesy dictates that you should ask for a person's permission before copying anything they're written to anybody else.

                            I note from the privacy policy....

                            "5.2 By submitting a Contribution to the Forum you agree to grant the MND Association a non-exclusive worldwide royalty-free perpetual non-revocable licence to use your Contributions. Although you will still own the copyright in your Contribution, MND Association will have the right to distribute, adapt, modify, display, reproduce and transmit such information in any and all media without any duty to account to you. You also grant the MND Association the right to grant licences to users of the Forum to view and copy such information for personal use and to grant any other sub-licences."

                            Have you been granted a sub license?

                            Given this has happened this will greatly reduce the things I'm willing to share on this forum as I've already shared some significant information about my personal position which I would not want to go any further without my direct and express permission.

                            Originally posted by Doblett View Post
                            It is utterly unacceptable to criticize a charity who give so much to helping others.Don
                            Please note that being a charity and helping others does not necessarily bring you absolute and total adulation - see for example https://en.wikipedia.org/wiki/Mother_Teresa
                            Last edited by nunhead_man; 26 June 2018, 09:09. Reason: update
                            Warmly


                            Andy

                            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                            "Things turn out the best for people who make the best of the way things turn out"

                            Comment


                              Good afternoon all,

                              Nunhead_man is correct, a number of our Rules and Privacy Polices have been breached within this thread. Our Policy states that all members are to treat all content as confidential, and not to disclose such information to any others without the prior written consent of the member in question (7.2). The forum should also not be used to invade another members privacy or to violate good morals and practices (8.4.2/3)

                              If you want to remind yourself of these practices, you can find the Rules and Privacy Policy here.

                              Any forum member found to be breaking the Rules and Privacy Policy could be subject to a warning, a suspension or a permanent ban.

                              We hope that this incident will not deter any of you from using the forum, and that it will remain a safe place for you to share your experiences and thoughts with each other.

                              Regards,

                              MND Forum Admin
                              Our working hours are Monday to Friday 8:30am until 5pm

                              Comment


                                Funny, I just noticed, I haven't added my location too!!! , and now did.
                                Last edited by Jay; 27 June 2018, 13:31.

                                Comment

                                Working...
                                X