UK: Healthsense, formerly called Healthwatch

CR passed away last December, however her legacy lives on.........

 

That’s good to hear. Thanks for the context. Much as propagation/repetition of misinformation about ME/CFS obviously annoys me (especially when used as an argument against one of the few people taking it seriously) I’d much rather have people who are open to listening than those who aren’t.

 

I must be doing my pointing out wrongly ;-) I will probably meet NR in person on 28th November as I have been persuaded by the newsletter editor Mandy Payne to go to their Awards night...and, as she says "put faces to names and maybe get the chance to put some points over and make some contacts" https://www.healthsense-uk.org/news...-ceremony-in-london-thursday-28-november.html

 

Yes, exactly. He seems to think it’s either genetic or it isn’t but it’s not as simple or as binary as that.

 

Didn't Florence Nightingale famously get ME/CFS (as far as we can tell from historic symptom descriptions and past diagnostic labels) and other historical personages so I'm not sure why he'd describe it as a new entity (and implying what exactly by so doing) ?

That said, globalisation has made it easier for humans to travel and spread viruses ( and we are encroaching into nature more in some parts of the world) , so wouldn't you logically expect the number of people experiencing viruses and post viral syndromes to have increased?

 

Not necessarily. People who develop ME/CFS may be destined to develop it for reasons unrelated to viruses over perhaps a 5-10 year time window. But a virus may trip the process into action. Since people have always tended to get a virus of some sort at least every other year the rate might not change much.

 

Would you like to explain a bit about this time window? Do you mean that there might only be a 5-10 year time window during which someone could develop ME/CFS? If so, why would that be the case, rather than a lifelong vulnerability? (I have a feeling I'm misunderstanding you!)

 

I am suggesting that some underlying process gradually shifts the person's physiology into a position where an additional stimulus makes it evident. We know that disease processes can evolve silently over 5-10 year spans - that is true for rheumatoid and diabetes for instance. Longer than that would be hard to establish I think, but could occur. This would be different from just life long susceptibility. There would be a third factor (in addition to genes and an environmental trigger) that might be set off by another environmental event or just start up of its own accord by chance.

 

Environmental exposures are a possibility, but you cannot get it looked at.
In 2001, the family were impacted by agricultural spraying of glypgosate
Affected eyes in particular.
HSE field officer did come out.
Pesticide Impact Appraisal Panel notifed.
Big black hole ensued......
I developed chemical insensitivity.as a result.

 

Gosh. This explains why she was extremely hostile to me on the Healthsense forum.

 

I am surprised that Caroline R's and her malign influence had passed you by...!? I think I have been around all this stuff and nonsense, not 'Health-Sense' far too long.

Trouble is, despite my advancing years, my memories and recall are intact!
Perhaps I am reincarnated as a elephant!?

 

She was so rude, I just decided to ignore her.

 

How wise you were..!

 

Well when someone with ME has to go into hospital for a non-ME related reason a bed away from all the light and noise might help?

 

Perhaps getting off topic for this thread but according to Gerd Gigerenzer (in his book Risk Savvy) prostate cancer is over-treated, leading to many men unnecessarily suffering the consequences of surgery (incontinence, impotence) when they would have been fine and eventually died of something else long before the prostate cancer had a chance to become a problem.

 

HealthSense is likely going to cease to exist. I got this message yesterday

Dear colleagues,

As was discussed at the AGM we have approached Consilium Scientific (CS) with a view to folding HealthSense into Consilium.

The primary reason why we need to do this is a critical shortage of volunteers needed to run HealthSense: the organisation has always relied on volunteers and while the enthusiasm remains as strong as ever we are increasingly short of people able to commit enough time to our work.

As of the AGM we no longer have a secretary and our treasurer wishes to step down as soon as possible. Mandy Payne is our newsletter editor but she does many other things for the organisation and is a real, long-term enthusiast for our activities. However, she has decided that continuing to publish the newsletter is not justified in terms of the amount of impact that it has. We have agreed that the Autumn issue just published will be the last HealthSense Newsletter. We have also recently lost the person who has administered our Student Prize competition and the overall co-ordinator of the competition may wish to step aside in the near future as well.

Consilium’s proposals have been circulated and there is a good deal of overlap in our aims. However, CS exists specifically to improve scientific rigour and transparency in clinical research while HealthSense is more broadly concerned with evidence-based healthcare in practice. This different focus – from bench to bedside – means some of our work simply would not fit.

Essentially, CS would subsume HealthSense. It would continue the Caroline Richmond Student Prize competition but would not want to continue with the annual HealthSense Award. If we go ahead with the merger it would mean that Thursday's ceremony with Patricia Murray would be the last. A merger would also mean the end of the name HealthSense unless anyone wants to start a separate organisation.

Consilium is planning to set up a Campaigns and Advocacy function which would take forward TranspariMed and could easily incorporate voluntary input from current HealthSense members. CS considers that there’s no reason this couldn’t grow to focus on specific issues in which HealthSense members have long been interested: for example, campaigns on clinical trial reporting or on screening might be a good fit. On the other hand, campaigns against quack treatments would not be. (In such a case we would be left individually to work outside CS.)

Some members have worried that CS is not a registered charity and its website is not very forthcoming about where its money comes from – perhaps paradoxical in an organisation devoted to transparency. However, its accounts are publicly available at Companies House. Leeza Osipenko (who is both a HealthSense stalwart and CS’s CEO) confirms that they do not take money from pharmaceutical companies and only received funding from two patient organisations (MPE and Motor Neuron Diseases). They have small grants from JustTreatment (and indeed from HealthSense), and big ones from the NIHR and Arnold Ventures, a U.S. philanthropic organisation, as well as some modest donations via the Donate button on their website

It would be sad to see HealthSense disappear after more than 30 years of hard work, enthusiasm, several modest successes and one or two real achievements. But it is very hard now to see a practical alternative.

If there is a group of (hitherto silent) volunteers prepared to take over the helm of HealthSense as a broadly-based campaign for evidence-based healthcare treatments please make yourselves known to me at chair@healthsense-uk.org in the next day or two. Otherwise the officers will propose to the Committee that the Consilium Scientific offer should be accepted.

Best wishes.

Roger Fisken
Chair of HealthSense

chair@healthsense-uk.org

 

This is a very popular excuse for not bothering even to make the diagnosis. If the diagnosis is made and the surgeon has the intelligence to advise patients well then those like me who are cured have the chance to live without hormone therapy and constant fear of what next.

The real problem, and the reason why active management does not look as good on paper as it should is that most urological surgeons are either dumb or money grubbing or usually both. I was fortunate to have been directed to one of the exceptions.