Any hope for UK patients going forwards?

[RogerBlack]

Assuming for the moment rituximab isn't a cure for most.
There is lots of biochemical work going on at the moment, and it seems not wholly unreasonable that a root cause may be found in 2-5 years.
After this root cause is found, nothing changes rapidly unless there is an available drug that is safe, well tolerated and cheap.

If, for example it was found that 100g of really good mint chocolate a day cured CFS. (or more seriously, some out of patent drug for something that's cheap to make, and has gone through all safety trials, in many countries doctors could prescribe this immediately off-label.

If this is not the case, then we're looking at more like 17-25 years, once a cause is found, to investigate possible drug targets, synthesise a new compound, see that it is safe in animals, see it's safe in a small number of healthy people, try it in a small number of ill people, then a larger number, and finally a full trial before release.

www.fdareview.org/03_drug_development.php
Funding is also an issue - this will take around $100M to conduct the trials only.

 

[slysaint]

A cure would be nice but I will be more than happy with a recognised biomarker test.....for starters.

 

[Binkie4]

I have a sort of biomarker. I have lost my fingerprints.

Cheney or Peterson said that 20-50% of pwme have no fingerprints. ( Osler's Web).

Fits with last time I went into NYC ( son lives there), it took ages to clear passport control. Huge problem with getting fingerprints. Eventually got through and was told I would make a good criminal- because I had no fingerprints.

GP quick to take the point that "false illness beliefs" were unlikely to have done this.

 

[HowToEscape?]

I have a sort of biomarker. I have lost my fingerprints.

Cheney or Peterson said that 20-50% of pwme have no fingerprints. ( Osler's Web).

Fits with last time I went into NYC ( son lives there), it took ages to clear passport control. Huge problem with getting fingerprints. Eventually got through and was told I would make a good criminal- because I had no fingerprints.

GP quick to take the point that "false illness beliefs" were unlikely to have done this.

No, it's false illusionist beliefs which are somatized to your fingertips. Mr. Wessely happens to be developing an online cure for that.

 

[AdamS]

If a cure/reliable test is eventually found, I won't be waiting around for it to come to the UK, i'll be seeking it out myself no matter what country it's in, even if someone has to carry me...

 

[dangermouse]

If a cure/reliable test is eventually found, I won't be waiting around for it to come to the UK, i'll be seeking it out myself no matter what country it's in, even if someone has to carry me...

That's pretty much how I feel

 

[Binkie4]

http://www.meassociation.org.uk/201...ghlights-of-burgess-hill-meeting-14-may-2016/

@Research 1st

Re Dr Bansal and rituximab in U.K., there is a short report of his comments after his lecture last year above. @charles shepherd was there and I think prepared these notes.


EDITcharles shepherd- can you offer any more information on rituximab trials in U.K. and US as referred to in link above? There seems a lot of hope in this thread ( naturally) but I think Dr Bansal was not very positive in the views he expressed. I was at the lecture too, almost a year ago now. Any movement?

 

[adreno]

If/when a reliable biomarker can be found, even the UK has to eventually accept that. Nothing is going to change before then, I firmly believe. And those who test negative on the biomarker will still be thrown in the MUS box.

 

[MEMum]

If a cure/reliable test is eventually found, I won't be waiting around for it to come to the UK, i'll be seeking it out myself no matter what country it's in, even if someone has to carry me...

See you in Norway!

 

[MEMum]

From conversations with Dr Bansal a couple of years ago, some of his patients went to US for Rituximab treatment. They didn't improve. He was unable to provide info on whether they had antibodies or not. He seems to think of it as a very 'dodgy/serious' drug. I understand he has at least one middle-aged patient doing well on Methotrexate, no idea the definition of well,
Sometimes I feel he doesn't fully understand the extent of the impact on normal life/work/social interaction/cognitive impairment, tho he does what is allowed under NICE.
@Blinkie, we saw him for prob 18 months from Sep 2012.

I was horrified today by a document given out at the Sutton ME clinic which includes:
"Medical investigations show that there is no disease cause for these physical symptoms: they occur as a direct result of inactivity and prolonged rest"

What hope is there for anyone in the UK with ME when one of the few consultants who has carried out immunological (science-based) research allows the hospital ME/CFS clinic to hand out this!

It then goes on about BPS.....

 

[Binkie4]

How will it be decided who gets the cure first, bearing in mind it may cost a lot? Ampligen costs a fortune, presumably so will rituximab.
So national health services may be reluctant to fund, as may private insurers ( co pay may be bigger).

Will the decider be : money( those who can cross the world to afford treatment)
a subset identified as likely to respond,
ability to fund total cost, age ( do we give it to young or old first),
do we give it to those with economically productive years ahead,
Do we treat those with recent illness or those with the longest illness

There will be lots of other possible groupings - I have tried to stay within .....

It may seem too soon but how will this be decided? Am unsure how Ampligen was allocated in US apart from money and location near a treating centre?

I would like treatment but how do I measure up??........

 

[Binkie4]

@MEMum

I saw Dr Bansal last week having seen him once on the NHS in about 2010.

I was referred to his NHS clinic again last year but only saw a nurse and was told Dr B only saw patients who needed a diagnosis: not me. Offered GET so I left, no follow up. You are on your own with ME and find your support in forums like PR not doctors.

I can hear your pain. Mine too which is why I saw him last week privately. I didn't try to tell him how hard it is, having realised that no one gets it unless in their family. Just desperate to see if there is anything I am missing.

I saw the document you saw today.

There is no help in the NHS I am very sorry to say which is why I ran a mile last year.



NB for the benefit of others, there was a document posted today in a private group about the Sutton CFS service.

 

[keenly]

"CFS is not a disease at all but a complex and ancient mammalian adaptation state used to survive an existential threat likely posed in the case of CFS by a loss of redox buffer."- Dr Cheney