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UK NHS Online Clinic for August is CFS/ME & Fibromyalgia

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I didn't even know this existed! :zippit:

Welcome to the online clinics

"The August session of this online NHS clinic will be covering ME, CFS and Fibromyalgia. It is is being organised in conjunction with The MEA. Taking part, and answering questions, will be myself, Dr Nigel Speight (MEA paediatric deviser) and Sue Luscombe (NHS Dietitian)."


From MEA Facebook. Dr Charles Shepherd.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
That looks a good opportunity for consciousness-raising among PWME who have just gone through the NHS diagnosis mill and may not be aware about the issues around CBT/GET etc. and among NHS professionals who may also not be aware of the issues around CBT/GET.

A date for our diaries! :)
 
Messages
15,786
I didn't even know this existed! :zippit:
Dr. Speight looks like a very good one - explicitly opposed to the psychosomatic theories :thumbsup:

Sue Luscombe seems to have a pretty superficial grasp of the dietary issues and supplement needs of ME patients though, but at least accepts that there are food intolerances, and that PEM is a real thing. So she might experience a bit of a learning curve in some regards, but seems to be on the right track. A document she wrote about it is at www.bda.uk.com/foodfacts/CFS-MEandDiet.pdf
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
MEA to take part in NHS Choices online health clinic | 14-20 August 2013

by Tony Britton on July 23, 2013

The ME Association are to take part in an online ME/CFS and Fibromyalgia clinic being hosted by the ultra-busy NHS Choices website next month.

The clinic – which is expected to attract visitors in their many thousands – will run for a week from August 14 to 20.

MEA medical adviser Dr Charles Shepherd will field medical inquiries – with other experts on tap to deal with inquiries that are posted on the forum.

Other experts listed so far include Action for ME welfare rights officer Sarah Lawrence, specialist dietitian and nutrition consultant Sue Luscombe and a health writer, Wendy Green.

Email this address forums@talkhealthpartnership.com if you want a reminder when the online clinic is about to open.

Sue Luscombe and Dr Shepherd will join forces again on September 28 – when they will be among the panellists at an MEA ‘Question Time’ in Cornwall. Details HERE.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I'm getting a whiff of an opportunity to ask some difficult and searching questions.

I'm imagining most people with questions being fobbed off with advice to 'rest (but not too much), pace (but not too much), keep active and get enough sleep at the right times of day, make sure you keep busy, take anti depressants, yadda yadda yadda'

sorry, most cynical.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I'm getting a whiff of an opportunity to ask some difficult and searching questions.

I'm imagining most people with questions being fobbed off with advice to 'rest (but not too much), pace (but not too much), keep active and get enough sleep at the right times of day, make sure you keep busy, take anti depressants, yadda yadda yadda'

sorry, most cynical.

I hope not Justy. It's not the NHS answering the questions it will be Dr Shepherd et al. as I understand it. Probably have to keep the answers general - you know as we do on PR and elsewhere kinda 'Go see your own GP' 'We can't prescribe treatment' etc. but I'd hope for some better answers than if they came from someone without experience of ME.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I'm getting a whiff of an opportunity to ask some difficult and searching questions.


Even though we've got a 'friendly' answering the questions - Dr Shepherd, who knows his stuff - it's going to be a forum seen not just by well-informed members of the community but potentially thousands of PWME who are newly diagnosed or who might not know what's what, as well as the NHS in general, so perhaps there's something to be gained by asking about the NHS's shortcomings in this area ad asking those difficult questions. Why aren't we screened using the IACFS Primer guidelines? Why can't we have anti-virals if we're willing to take the risk? Could we have Rituximab? Why is no medical treatment available at 'specialist' ME/CFS centres? Why aren't we routinely screened for OI? Etc.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I'm getting a whiff of an opportunity to ask some difficult and searching questions.

I'm imagining most people with questions being fobbed off with advice to 'rest (but not too much), pace (but not too much), keep active and get enough sleep at the right times of day, make sure you keep busy, take anti depressants, yadda yadda yadda'

sorry, most cynical.

Dr. Nigel Speight is the medical advisor to the 25% ME Group, so it should be much better than this.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Bump.

Apparently you can now post questions in advance for the panel to answer.

Here is who has signed up for the panel.

I can't see Nigel Speight up there which is a shame. Maybe more will come on board nearer the time.

Oh the rumours were true. Um... hypnotherapist. Oh. Ok. Well... Crap :snigger: Sorry. I know some find this sort of therapy useful, but, oh dear... hilarious personal experience... :zippit:

Here is where you can join and leave a question. I think you probably need to read the rules/guidance beforehand.

Can I just say in a more serious tone of voice, that I don't know if they intentionally separated ME from CFS in the questions to be asked bit. It could be an oversight. Might be worth asking...

:)
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Dr. Speight looks like a very good one - explicitly opposed to the psychosomatic theories :thumbsup:

Sue Luscombe seems to have a pretty superficial grasp of the dietary issues and supplement needs of ME patients though, but at least accepts that there are food intolerances, and that PEM is a real thing. So she might experience a bit of a learning curve in some regards, but seems to be on the right track. A document she wrote about it is at www.bda.uk.com/foodfacts/CFS-MEandDiet.pdf

A BIT of a learning curve....?

from 'Chronic Fatigue Syndrome/ME and Diet' that you linked to:

A healthy balanced diet contains a variety of foods from each of these groups.
• Bread, other cereals, potato, and rice, especially slow release types of starchy food with a low GI (glycaemic index) such as pasta, porridge or wholegrain cereals. Eat a portion at every meal

That's the rubbish that has been peddled by official bodies since at least the 70s.

Milk and milk products, including cheese and yoghurts.

More rubbish. The (beneficial) leaky gut diet commonly excludes milk as well as reducing carbs and removing gluten.

It might be worth trying to add in some slow release or low GI carbohydrates such as pasta, porridge, wholegrain cereals to help energy levels.
See above.

Some diets can be very restrictive and can create a lot more work and effort for sufferers and their carers

In the short term, perhaps, but in the long term they may produce great improvement. It's no good including a wide range of foods in your diet if they cause or perpetuate leaky gut and consequent autoimmune disease, and at the same time cause food to whizz through you so fast that few nutrients are absorbed.

Weight increase may result from a much reduced activity level.

Contrary to popular belief, evidence for this is poor.
Let's hope the other experts make up for this junk!
 
Messages
13,774
research & funding
Sorry but our panel of experts are unable to answer questions that are in regard to funding or research matters, or a complaint against the NHS. These questions need to be addressed to your local GPC (General Practitioner Council).
?

So no talking about 'research'?

"We're a panel of experts, so just trust us. We cannot be expected to answer questions about evidence, or research. That would get in the way of our expert opinions."

re the diet advice - I've seen much worse with CFS, and am sympathetic to the concern that some patients take on diets which make life more of a chore without bringing much real benefit, but she also goes beyond the evidence with their own advice. Increasingly, I think it's best to just have people play about and do what feels best for them. The quality of evidence used for a lot of diet advice is just shockingly bad imo. No wonder they don't want to talk about research.
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
I see a Dr. Neil Speight MD Intergrative doctor in Charlotte, NC and I'm wondering if there is any relation between these two as he is a very open-minded physician. I will admit that I think he was caught off guard by my amount of diagnosis and the amount of medication currently taking. He was going to start in a more typical medical doctors mentality in collecting data and as well collecting tubes of saliva and had me taking glycine and several pills a day of DMSA and a dose of potassium.

I want to go and see him again soon and I'll have to inquire as to any relation?
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Thanks for reminding me about this. I HOPE there hasn't been trouble. The forums that were open were closed. They had been allowing questions to be posted; but then it all shut down - was locked - for a week or so and still appears to be locked now:

Online clinic on CFS/Fibromyalgia/ME - 14-20 August 2013

It's a clickable link (Sash ;))

Maybe they were getting too many questions or too much debate? I don't know. Seems weird and the ME Association commented similarly last week.

ANYWAY... so far as I know it's open for business tomorrow [sigh] :(
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Dr Nigel Speight (Pediatric Medical Advisor to the ME Association) will incidentally be coming to Cornwall MeSci to our 'Question Time' next month.

I am not sure he is on this NHS clinic panel now however - although it was said he would be initially.

Did you see THIS - he was in Northern Ireland at the weekend - went down a storm by all accounts :)
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Nope, and I still haven't. :( I'm not on Facebook. :)

For you and only you:

Dr Nigel Speight:"If we get a successful treatment like rituximab, then the psychiatrists can all pack up and go home". (Loud applause).

"I'd like to apologise to you for the appalling treatment you receive from the medical profession. I'm probably the only doctor to ever say that". (Loud applause).

"I've been involved in 30 poorly founded child protection cases, and won 28 of them". (More loud applause).
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
For you and only you:

I am honoured at such a special privilege! ;)

I hope everyone else has covered their eyes, seeing as it was just for me. :D

Is Nigel Speight really the only doctor to have apologised for the appalling treatment that ME sufferers have received? I hope not.