Any hope for UK patients going forwards?

[Skippa]

So, when "they" finally find a cause / treatment / cure whatever, will UK patients still be denied it because "MUS"?

Will the denial hold fast while the rest of the world gets treated and gets their lives back?

I'm not going to talk to my GP or any health professional about my ME/CFS ever again. I'll just get any new or problematic symptoms looked at on a case by case basis.

But... if a treatment does become available, I'd like to think I'll be able to get hold of it.

Hopefully it will be obtainable shipped from overseas pharmacies? Can anyone imagine a ban on the meds on the NHS long after everyone else starts taking them?

 

[helperofearth123]

The UK ritiximab trial is starting in Norwich next year providing the Norway results are positive, so the results from that should speak loudly in the UK.

 

[keenly]

NO, we have to fend for ourselves.

 

[Chrisb]

No. In the words of the revolutionary French song "La chanson de Craonne "

"Car nous sommes tous condamnes, c'est nous les sacrifies".

If I knew how to put in the acute accents on the "'e'" I would.

 

[Ambrosia_angel]

No the NHS is a mess. We are last on their list of concerns sadly.

Even people with other chronic illnesses are just given basic meds and are told to go away.

 

[Esther12]

There's hope... the PACE debacle might bring about real change. We're up against a lot of entrenched interests though, and it won't be easy to get real progress.

 

[A.B.]

So, when "they" finally find a cause / treatment / cure whatever, will UK patients still be denied it because "MUS"?

Will the denial hold fast while the rest of the world gets treated and gets their lives back?

The situation in the rest of Europe is also bad, we just don't hear about it as much.

 

[Mohawk1995]

I believe there is always hope. After all:

"Rebellions are built on Hope" Jyn Erso and Cassian Andor Rogue One a Star Wars Story

 

[CFSTheBear]

My brief reading on this is that I'm scared at the amount of hope that is being put by the community on the rituximab trials. The findings thus far don't seem particularly conclusive, and also don't appear (to my limited knowledge) to point to a wider cause of acceptance and ability to medicate subtypes of people with CFS. Would be interested in hearing from those who are more widely read and experienced than me, but my view is that I think an undue amount of hope is being put on the Norway trials...

 

[helperofearth123]

My brief reading on this is that I'm scared at the amount of hope that is being put by the community on the rituximab trials. The findings thus far don't seem particularly conclusive, and also don't appear (to my limited knowledge) to point to a wider cause of acceptance and ability to medicate subtypes of people with CFS. Would be interested in hearing from those who are more widely read and experienced than me, but my view is that I think an undue amount of hope is being put on the Norway trials...

It's because there are no other major drug trials, at all, anywhere in the world for CFS. Literally its the only possible source of treatment.

 

[alex3619]

Hope? Yes.

Concern about delay? Yes.

Treatments and tests change medical opinion and practice. The elapsed time from publication to change can be over ten years though. It takes public or patient pressure to make things happen faster. That means advocacy. I think we should be prepared for a fight. I hope I am wrong, another kind of hope.

Cost of treatment will be a huge issue with Rituximab. Following that will hopefully be a phase 3 Cyclophosphamide trial, which is much much cheaper. However given that huge numbers of people with ME, the vast majority, cannot work full time, and are a burden on the state, if researchers can figure out who will benefit even a little reliably, and a reasonable percentage do not need ongoing treatment after a while, then we can expect it may be easier to get the NHS or any insurance to pay for it.

On the other hand there is likely to be a cap, and currently I would estimate that might be 18 months of treatment. Most who will not longer need treatment after a while might be found in that time using current data.

Other drugs may be found as well. The cost of drugs is the key issue here. Medical systems may balk at high costs if a lifetime treatment is required. If a short course is all that is needed then I think it will be easy to swing.

Rituximab results might be unblinded in October. While that may not wind up as the drug of choice, if the results are good then its proof of concept ... ME can be cured by immune altering drugs. Other drug trials will follow.

If the Rituximab trial gives poor results then it will be a different story.

Politics is the game changer here. The political climate is not currently geared toward this, anywhere. All of us should be prepared to become advocates for drug availability if we can do that.

 

[Binkie4]

I had a consultation with Dr Bansal yesterday in which rituximab was very briefly mentioned. He stated clearly that research has so far shown no advantage from treatment by rituximab for Caucasians outside Norway.

This is not new information. I went to a lecture he gave last year after which he, in talking to a colleague, said that rituximab had not been shown to be effective outside Norway.

It may be that rituximab is only effective with small subgroups, or the Norwegian population have different features which make it work. I think I've read something elsewhere about this.

I think the principle remains however that when effective treatments are found, cost and length of treatment will be hugely significant issues and we will have to advocate/ fight for treatment.

EDIT on 27/4/17: see post on following page which gives link to lecture referred to above

 

[Aurator]

I went to a lecture he gave last year after which he, in talking to a colleague, said that rituximab had not been shown to be effective outside Norway.

It's not been shown to be effective in Norway yet, but they're hoping to find out the answer with the phase III trial there. I wasn't aware there had been any similar-sized trials to the Norway one elsewhere. What is Dr Bansal basing his assertion on? Or is he simply saying, though not in so many words, that Rituximab has not been shown to be effective anywhere?

 

[Binkie4]

He seemed to be clearly acknowledging some success in Norway, but not elsewhere.

I don't know where else full clinical trials are taking place, if they are. To be honest it all seems a long way ahead to me, not yet believable.

 

[A.B.]

Rituximab is probably at least going to be an important step in all the right directions.

 

[Diwi9]

I had a consultation with Dr Bansal yesterday in which rituximab was very briefly mentioned. He stated clearly that research has so far shown no advantage from treatment by rituximab for Caucasians outside Norway.

This is not new information. I went to a lecture he gave last year after which he, in talking to a colleague, said that rituximab had not been shown to be effective outside Norway.

It may be that rituximab is only effective with small subgroups, or the Norwegian population have different features which make it work. I think I've read something elsewhere about this.

I think the principle remains however that when effective treatments are found, cost and length of treatment will be hugely significant issues and we will have to advocate/ fight for treatment.

I've seen more than once on PR that OMI has informally reported similar results to Norway (1/3 recovery, 1/3 improved, 1/3 non-responders). I'm with @alex3619 ...Fluge & Mella expect cyclophosphamide to pick-up some of the non-responders.

As ME/CFS is beginning to be better understood and sub-typed, better treatments can addressed. Right now the diagnosis is over-inclussive, and there is likely a whole portion of us who don't actually have ME/CFS. Development of a biomarker will help limit ME/CFS from being a "catch-all" diagnosis.

Sorry if rituximab is hijacking this thread...I remain optimistic about the future treatments of ME/CFS. As for the UK government policies...I'm not a citizen, but hope the global ME/CFS community will support UK sufferers when treatment options become clear and are backed by scientific studies.

 

[Research 1st]

This is not new information. I went to a lecture he gave last year after which he, in talking to a colleague, said that rituximab had not been shown to be effective outside Norway.

It may be that rituximab is only effective with small subgroups, or the Norwegian population have different features which make it work. I think I've read something elsewhere about this......

Hello.

I believe Dr Bansal is mistaken in his statement to you, however, he must have access to lots of information I don't.

Please can you try and find out the following:

1) What published studies is Dr Bansal quoting where outside Norway Rituximab doesn't work for whites? For Dr Bansal to make such a blanket statement he must have seen global studies, probably 10 or more countries that Rituximab works in non whites. Can he kindly provide this information to the ME CFS community? I have searched and not found any studies, including studies designed by race.

2) What 'CFS' criteria where the patients in the negative studies diagnosed with? Fukuda, CCC CFS, ME-ICC etc.

3) Where were the patients sourced from to be in these studies? Private paying, a 'chronic fatigue' clinic, psychiatric hospital etc.

4) How long had they been diagnosed with ME CFS for. Is there any data?

Combined, all of these factors help us to understand the picture more accurately, as it stands, we have no evidence to support Dr Bansal's statement to you, hence I am excited to learn of the new data that Rituximab does not work in CFS outside of Norway.

Thank you.

 

[Research 1st]

Reason there is hope globally, never mind the UK for future drug therapy in ME:

Rituxumab and other medications will have far higher treatment success if biomarkers can be used to screen patients before autoimmune therapy is administered and before drug trials go ahead.

To my knowledge, these biomarkers weren't used in any published paper on CFS to screen patients, even experimentally so far. So if a study finds 24% of patients respond to a drug, the figure may by 50% or higher with biomarkers. This is common sense:

For example we have the following dilemma: if AIDS was diagnosed with CFS criteria, then Anti Retroviral drugs would not show much of an effect in AIDS as few patients would be HIV positive in drug trials (chronic fatigue is a common complaint), and thus the drugs aren't being given to AIDS patients in the majority, just by chance. The drug trial then fails. With an HIV test, everything changes though. So to treat AIDS, we use an HIV test, and then we make the patients better because we know the drug worked in a drug trial.

The same issue applies to treating ME with any drug, including autoimmune medications.

We need ME biomarkers, before we can establish if a drug trial 'failed' or not.
Until then, we are treating heterogenous groups of patients who we presume have ME, but we don't know have it.

Non majority negative studies, e.g. 1/3 responded, are thus not necessarily what they appear to be.

 

[Binkie4]

@Research 1st

I will certainly bear in mind your questions about published studies but please be aware that I see Dr Bansal as a patient, and my next appointment of 15 minutes will not be for several months. There is very little time for discussion and I will need to prioritise my own health, tests and results. From my experience of one appointment, he does not overrun so time is precious.

 

[dangermouse]

So, when "they" finally find a cause / treatment / cure whatever, will UK patients still be denied it because "MUS"?

Will the denial hold fast while the rest of the world gets treated and gets their lives back?

I'm not going to talk to my GP or any health professional about my ME/CFS ever again. I'll just get any new or problematic symptoms looked at on a case by case basis.

But... if a treatment does become available, I'd like to think I'll be able to get hold of it.

Hopefully it will be obtainable shipped from overseas pharmacies? Can anyone imagine a ban on the meds on the NHS long after everyone else starts taking them?

I sincerely hope that when cause/treatment/cure is found/developed it will be adopted in the U.K. and in timely fashion.

If I have to go elsewhere for treatment/cure then I have to hope that it would be affordable and somehow manage to get there.

I don't visit my GP often (I'm not well enough the majority of the time to attend), if I do it's not normally regarding ME. I just see GP for thyroid monitoring and with any issues concerning my heart medication.

To be honest I would rather not present myself to any health professionals. When things change for the better I'll maybe begin to feel differently, but it would take time.

I wait for the breakthrough and subsequent treatment, a time when we will all be able to live again and escape the current state of affairs.

It will be such relief.