United Kingdom: Brakespear Clinic - Dr Basant Puri; Dr Joan Monro

Dr Basant Puri

Uk based
He seems to practice privately at Brakespear Clinic in Hemel Hempstead.
His recent papers centre on Nitro and Oxidative stress theory and seem logical and well written (to my layman eyes) .
But Is he reputable?

But the Brakespear clinic (or its founder) seems to have a bit of a checkered history according to ME Pedia so not sure if it's a good/safe place to visit? Though perhaps tbf that doesn't reflect on him given nhs institutions don't support biomedical approaches.
Not that I'm swimming in options either.
Breaks pear apparently offer IV IG which interests me. And seem relatively transparent.
I'm severe and continuing to decline despite pacing and mind-body attempts so seeking a reputable UK biomedical consultant (or US who'll take UK patients by zoom though I imagine they're too swamped with domestic LC patients). Tia

 

Dont know much about him but he has written a book, which i skimmed, some yrs back & gave it away to charity shop, which means i didnt think that much of his ideas... but i cant really remember why. I *think* it might have been because he was very into EPA supplementation, but i cant remember.

Chronic Fatigue Syndrome: A Natural Way to Treat M.E.: Amazon.co.uk: Puri, Basant K., Professor Basant K Puri: 9781905140008: Books
Although it was written in 2004 so his ideas may well have changed since then


Re IVIG you might find this thread interesting
Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Brownlie and Speight | Science for ME (s4me.info)

Sorry you are deteriorating that sucks

Hope you're able to find someone to help you

 

Very foggy head but?
Basant Puri... 'Vegepa' capsules for ME which are advertised in MEA's magazine?

 

Thanks Jem,
I didn't know about the book.
Many Thanks. Funnily enough that ivig post popped up on my Facebook feed this morning. I was originally interested as someone in USA reported a very good improvement anecdotally from it way back but from that article it's shown a mixed response so I probably need to read up much more on immunology.
Antivirals and also LDN interest me too. Oh and potentially FMT. And an immunological perspective in general as in the back of my mind there's a little niggle of a question as whether I've actually got some obscure immune disease, not having stabilised after 4 years. Not to say that ME case descriptions don't fit me well.
I'm viral both in original onset (probably ebv /glandular fever 20 years ago but extremely mild) and viral progression 4 years ago (probable viral meningitis post surgery)

 

I don't know if this is new or not

https://www.breakspearmedical.com/treatments/chronic-fatigue-syndrome/

however their info sheet has not been updated since the new guidelines (it seems to be from 2017)
https://www.breakspearmedical.com/resources/

 

In answer to the original poster, no, this is not reputable. It is straightforward misrepresentation of reality - i.e. pseudoscience.
The appearance of various scientific sounding words means nothing. Nobody has found any evidence of a cytokine shift in ME/CFS of the sort claimed. It is a pity that this sort of bullshit is still legal in the UK.

The only contact I ever had with Breakspear when I was practicing rheumatology was when patients explained that they had spent tens of thousands of pounds on worthless treatments. From what I can see from the blurb they specialise in phoney care of arthritis and ME.

 

Dr Jean Monro

One of Britain's longest-qualified doctors, 87, is struck off for 'unconventional' treatments on children - including making boy, six, wear oxygen mask for hours every day

https://www.dailymail.co.uk/news/ar...ongest-serving-struck-treatment-children.html

 

This article, and others that came out at the same time, disgusts me as a many-years patient of Dr Monro. The BS about her treatment not being rooted in scientific or clinical fact is pretty laughable considering, as @Hutan said, how typical that is of NHS BPS-pushers, and indeed many doctors in general. What they don't like is that she goes beyond the paltry, rushed investigations and inadequate treatments (if any treatment at all) dished out on the NHS and instead she tries to solve puzzles, to get to the bottom of things. With her treatment, I went from severe to moderate. Not cured, but a hell of big improvement to go from bedridden in a darkened room with unbearable symptoms and having to be in a wheelchair to go anywhere, to being 'just' mostly housebound, more-bearable symptoms, and able to go out carefully once in a while walking on my own two feet.

The reasons given for her being struck off are really pretty poor. No harm was done in either case, which is more than can be said for some NHS doctors who do harm and get away with it. I am aware that Dr Monro has been the target of several GMC investigations over the years, brought by NHS doctors who don't like her work, not by patients. The cases were always dropped in her favour, but this time they decided to make it a proper witch hunt. Especially weird since she retired from practice as a doctor in 2021 (she still runs the clinic and now functions as a naturopath there), so why a strike-off so long after the event?

Yes, I too thought it weird that the article found it appropriate to say she did 'organic gardening', and also bizarre to say she's 'a devout Christian paediatrician' - a) what does her religion have to do with anything, and b) she is not a paediatrician! She is (was, before retiring) a neurologist and I've only known of her treating adults, I didn't even know she treated children. Altogether, it disgusts me that it was thought appropriate to smear her in the press.

I hope she's bearing up OK.

 

I have no opinion regarding this specific case but it is rich that doctors like Myhill are being stuck off for providing unevidenced treatments whilst the NHS continues to ignore NICE and harm another generation of ME and long covid sufferers.

GET and telling patients their symptoms are linked to their mental health has done far far more harm than alternative medicine treatments. My old GP should be struck off for destroying my ability to function. So should countless clinicians who have caused serious harm to pwME. More so the people who created this mess in the first place. Yet they all continue to operate with impunity and the idea that they should suffer consequences is deemed laughable.

 

GMC documents relevant to the Monro case: Link | Link. I'm not remotely surprised at their verdict but the point is well made that psychosomatic practices are just as problematic.

Off-topic for this thread, but it might be useful to get an informed legal opinion on the point at which any psychosomaticians' activity might prompt a GMC referral that has a reasonable probability of an adverse finding (or an NMC referral for a nurse or an HCPC referral for a physiotherapist). There have been recent discussions around civil clinical negligence claims but the GMC has its own policies and procedures.

There are still cases of pwME being told to perform unstructured or graded exercise or given "false illness beliefs" type CBT that are now actively recommended against. If a pwME worsened as a result of exercise, the doctor who told them to do so can surely no longer argue that a reasonable doctor would not have known that such worsening could be expected, because it's in the guideline. And following the Montgomery precedent, the informed-consent threshold changed - I'm not familiar with post-2013 practices & where the line is drawn precisely but a failure to inform a patient of significant known risks seems to now be considered a violation of informed consent (before Montgomery it was accepted that this was a matter of clinical judgement). So failing to inform a patient that worsening could be expected as the result of undertaking an unstructured or graded exercise programme might well be considered a violation of informed consent.

I'm also very curious as to whether there are any other areas of psychosomatic practice that might fall foul of changing, increasingly patient-centred standards & practices & professional responsibilities.

 

To my mind two wrongs don't make a right. I had to pick up the pieces after Dr Monro failed to provide appropriate treatment for people with progressive destructive arthritis over the years. moreover, they came to me because they had bankrupted themselves paying for quack treatments.

And if we defend Monro we have to defend Michael Sharpe equally.

 

I found it ironic that the same year Dr Myhill was suspended for a year for prescribing a B12 injection, NHS doctor Dr Jane Barton was let off for causing 12 patients under her care to die. https://www.theguardian.com/society/2010/jan/29/jane-barton-doctor . Her brother was in the GMC and knew one of her hearing panel members, so that may have helped. https://www.telegraph.co.uk/news/20...families-650-patients-ask-has-dr-jane-barton/

 

I understand your point, and I'm not saying that alternative treatments that don't work are harmless.

But I don't think what the likes of Sharpe have done is comprable. It is of several orders of magnitude worse in both effect and moral culpability to declare people with a disease are not sick when they are in fact very ill, and can be rehabilitated with the one thing that makes them sicker, and produce badly designed and basically fradulent studies to back up your point, therby causing harm and death and stigma on a global scale, than it is to charge loads of money for treatments that don't work and potentially have side effects.

The point I was making is that the press and the GMC getting outraged about one whilst giving Sharpe and Wessely etc free reign to do what they've done is hypocritical in the extreme.

 

That is a debatable point but I also think things are more complicated. People like Monro have also had a global impact in terms of generating all sorts of fairy stories about things like allergies and much of the BPS can't is directed at people's 'false beliefs' in such stories. The two groups of charlatans feed off each other and patients suffer on both sides. Moreover, increasingly we are seeing groups of charlatans who mix and match the two sorts of voodoo - as in the gastroenterologist and their functional problems mixed with 'hEDS'.

Sharpe has never declared people not sick. He says they really are sick - that justifies his pay packet. His account of the sickness has been tested and proven wrong - at least PACE did that for us, however useless the design for showing benefit. We have no idea how much harm has come from people like Monro, but the harm through inappropriate advice I saw in my arthritis clinics was about as bad as it could be.

 

Yes I am sorry to hear about your patients. That sounds awful. I didn't mean to minimise that harm.

I know Sharpe has never actually said people are not sick but as someone who has gone through the ME 'care' that the NHS provides, that is how it is understood and how you are treated. Saying people's symtoms are psychosomatic is saying they are not really physically ill in the sense that most people understand it, including clinicians, whatever little verbal dance they might perform when pressed on it.

We could tie ourselves in knots all day with words like functional and talk about Decartes but at the end of the day the actual effect of BPS is that you are treated as though you are not physically sick but have a mental illness that needs treating through essentially exposure therapy.

Edit: I have pulled the thread off topic somewhat, apologies.