NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

Hi everyone. I know there hasn't been any chat about who us mysterious lay members are in a while, but I thought I should respond to some of the things in this thread.

Firstly, I totally get why people were suspicious of lay members who they hadn't heard of before. In my case, I was only diagnosed a year ago and it took me a long time to accept and publicly admit that I was ill.

I can't really share my opinions at the moment, but I can say that I have been ill for 14 years (since I was 4). I have felt totally let down by the medical profession and I've had my fair share of gaslighting and neglect. The main reason I'm doing this is to try to make sure in the future, children with ME aren't treated the way I was.

Just because I'm young and you haven't heard of me before, it doesn't mean I'm stupid or uneducated. Obviously I'm not perfect and I don't know everything about everything, but I do know what being a child with ME felt like, and that's the voice I'm there to try and ensure is heard.

I hope this provides a little reassurance.

Thank you, thank you.!..... children and young people get the worst deal of all.

I know as a mum, who has been fighting for over 20 years, (my son was fatigued at 4 and suspected of having ME at 8 in 1994); I know as a specialist professional teaching sick and needy kids since the early 1990's.
I am delighted you have been offered this important opportunity. I hope RCP, Guideline Developers and NICE do not let you down.
 
FYI the now 2 members of the NICE Guideline Committee and review for ME who were regarded by Waveney CCG as having a "conflict of interest” in the delivery of in their feasibility report for Suffolk and Norfolk ME and CFS Services, and who had offered to steer the ME Service ship into calm and safe waters…… After responding to a public NHS advertisement issued for a lead clinician to do so in 2015.....

Can someone explain this please. Two people have been appointed to the NICE committee from which organisation or are they patients or individuals?

Were they previously refused a place on the committee if so on what grounds? Are their appointments favourable for us or not?
 
Can someone explain this please. Two people have been appointed to the NICE committee from which organisation or are they patients or individuals?

Were they previously refused a place on the committee if so on what grounds? Are their appointments favourable for us or not?

Both from the London School of Hygiene and Tropical Medicine - Dr Nacul ( as a GP) and Specialist Researcher and Nurse Caroline Kingdon.

Don't think NICE refused them from the Committee. Our Local CCG ( Waveney) 'refused' them!

Definitely favorable to us to have them on NICE.
 
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Saran, good to see you here.

As fellow lay member on the GDG, I am delighted to be working with you over the next months to ensure that patient perspectives are heard. I am confident that you will bring a strong voice for young people to the group. Xx
I'll second this. Your voice is invaluable and you're doing us all proud (and your mum is ace!).
 
Hi Saran, thank you so much for doing this. I am sorry you have been ill for a long time.
My daughter, now 24, has been ill for 8 years, and moderately affected.

"Fortunately" my daughter was 16, when diagnosed, so we escaped the threats of being referred to social services etc.

I am on a couple of parents Facebook groups where there are regular incidents of the above. If more information on this is needed at anytime I could link you with relevant people. They did send a couple of people to the NICE scoping meeting and one of them spoke at length with the Chair. So hopefully the gravity of the situation is getting across.

Good luck and thanks again.
 
Hi everyone. I know there hasn't been any chat about who us mysterious lay members are in a while, but I thought I should respond to some of the things in this thread.

Firstly, I totally get why people were suspicious of lay members who they hadn't heard of before. In my case, I was only diagnosed a year ago and it took me a long time to accept and publicly admit that I was ill.

I can't really share my opinions at the moment, but I can say that I have been ill for 14 years (since I was 4). I have felt totally let down by the medical profession and I've had my fair share of gaslighting and neglect. The main reason I'm doing this is to try to make sure in the future, children with ME aren't treated the way I was.

Just because I'm young and you haven't heard of me before, it doesn't mean I'm stupid or uneducated. Obviously I'm not perfect and I don't know everything about everything, but I do know what being a child with ME felt like, and that's the voice I'm there to try and ensure is heard.

I hope this provides a little reassurance.
Excellent! Warm welcome Saran.
 
Saran, good to see you here.

As fellow lay member on the GDG, I am delighted to be working with you over the next months to ensure that patient perspectives are heard. I am confident that you will bring a strong voice for young people to the group. Xx

I'll second this. Your voice is invaluable and you're doing us all proud (and your mum is ace!).
Thank you, I'm looking forward to working with both of you! And my mums excited about being called ace, haha x
 
Hi Saran, thank you so much for doing this. I am sorry you have been ill for a long time.
My daughter, now 24, has been ill for 8 years, and moderately affected.

"Fortunately" my daughter was 16, when diagnosed, so we escaped the threats of being referred to social services etc.

I am on a couple of parents Facebook groups where there are regular incidents of the above. If more information on this is needed at anytime I could link you with relevant people. They did send a couple of people to the NICE scoping meeting and one of them spoke at length with the Chair. So hopefully the gravity of the situation is getting across.

Good luck and thanks again.
So sorry to hear about your daughter. My wonderful mum has put me in touch with the relevant people from a parents group she's in, thank you though!
 
An updated membership list was published today which confirms Caroline Kingdon and announces dietician appointment, Jennifer McIntosh.

The community paediatric nurse is apparently still yet to be appointed.

Dietitian: Jennifer McIntosh
Senior Specialist Dietician Mill Lodge CAMHS, Leeds and York Partnership NHS Foundation Trust

Nurse with experience in ME/CFS: Caroline Kingdon
Research Nurse, London School of Hygiene and Tropical Medicine

https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents
 
An updated membership list was published today which confirms Caroline Kingdon and announces dietician appointment, Jennifer McIntosh.

The community paediatric nurse is apparently still yet to be appointed.

Dietitian: Jennifer McIntosh
Senior Specialist Dietician Mill Lodge CAMHS, Leeds and York Partnership NHS Foundation Trust

Nurse with experience in ME/CFS: Caroline Kingdon
Research Nurse, London School of Hygiene and Tropical Medicine

https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents
I think this is everyone so far.
 
https://www.leedsandyorkpft.nhs.uk/.../4/2017/11/annual-research-forum-speakers.pdf

Page three of the above document has a paragraph on Jennifer McIntosh’s experience.
Is anyone familiar with the two chapters she has written for the dieticians’ Manual? She has mental health experience.


ETA: from the above document

“Jennifer McIntosh MSc, PGCHE, BSc (hons), RD
Jennifer has over 20 years’ experience working across a diverse range of dietetics with the last 16 years specialising in mental health. She has extensive experience within eating disorders, CFS/ME and was the clinical lead dietitian for the Leeds Care Group at LYPFT. Jennifer currently is employed by LYPFT whereby she has two roles as Specialist Dietitian within inpatient CAMHS and Allied Health Professional Lead for the Specialist and LD care group. She has published two chapters on the role of diet in CFS/ME within the Manual of Dietetic Practice, 5th Edition and Fighting Fatigue a practical guide to managing the symptoms of CFS/ME .Jennifer is has just completed her masters in Nutrition at Leeds Beckett University.“
 
https://www.leedsandyorkpft.nhs.uk/.../4/2017/11/annual-research-forum-speakers.pdf

Page three of the above document has a paragraph on Jennifer McIntosh’s experience.
Is anyone familiar with the two chapters she has written for the dieticians’ Manual? She has mental health experience.

Given recent experience with NHS dieticians ( diabetes and cancer in wider family members), where simple biochemical mechanisms seemed to be lost on them, I do wonder what can be achieved from this.
Proposing a diet of wholegrain, and high carbs for a disease ( cancer) which propogates via fermentation was asking for trouble.

There has been recent NHS England debacle re dieticians and links to major food industry interests. The Eat Well plate is a joke.
There are however, some nutritional deficiencies which can present the same way as psychiatric illnesses, so I may be a little too skeptical.

Not holding my breath re usefullness of this - it would be wonderful to be proved wrong.
 
Jennifer McIntosh
Is anyone familiar with the two chapters she has written for the dieticians’ Manual?

there is this contribution to Dietetic and Nutrition case studies:
https://onlinelibrary.wiley.com/doi/abs/10.1002/9781119163411.ch20

Chronic fatigue syndrome/myalgic encephalopathy
Summary
This chapter discusses the case of a 25 years old woman, Melissa, who was diagnosed with moderate chronic fatigue syndrome/myalgic encephalopathy (CFS/ME). Melissa's symptoms include headaches, eye pain, muscle and joint pain, poor sleep and concentration, sensitivity to light, palpitations and dizzy spells. Melissa was experiencing stomach pain, nausea and diarrhoea and as a result eliminated lactose and gluten from her diet, resulting in an improvement in the stomach pain and diarrhoea but not the nausea. Melissa has been referred due to poor nutritional intake, reduced appetite and recent weight loss of 4 kg. The referral also states Melissa takes a combination of vitamins in large doses including magnesium and coenzyme Q10. Melissa is prescribed a low dose of amitriptyline. The questions raised in this chapter include queries regarding the nutrition and dietetic diagnosis, special diets for CFS/ME, aim and objectives of the dietary intervention, and diagnosis of coeliac disease.

 
Some notes on the case study coauthored by Jennifer McIntosh:

Chronic fatigue syndrome/myalgic encephalopathy
https://onlinelibrary.wiley.com/doi/abs/10.1002/9781119163411.ch20

The case study is coauthored with Caroline Foster. An answers chapter (16) is based on an earlier chapter presenting a case study, 'Melissa', who has CFS, nausea with weight loss, and inadequate energy intake due to gluten and lactose elimination. She is considering seeing a homeopath and takes 10mg Amitriptyline.

The chapter discussing the case study recommends the Eatwell plate, eating little and often, choosing low GI foods, and avoiding energy drinks and caffeine due to energy and GI implications. It states that a number of diets such as the anti-candida diet are promoted for CFS/ME but are based on unreliable evidence.

It briefly explains coeliac testing. It states there is no evidence there is greater incidence of IgE mediated allergy in CFS/ME than in the general population and exclusion diets are generally not recommended but can be helpful w/ symptom management and IBS, and that patients should receive dietician input when excluding to ensure a balanced diet.

Nausea management advice is to avoid drinking w/ meals, eat little and often, avoid fatty or antagonising foods and GP may prescribe antiemetic if severe.

The chapter has the following on lactose intolerance:

Regarding the reported lactose intolerance, this often occurs in association with the gluten intolerance as the gut inflammation can cause a deficiency in lactase. This associated lactose intolerance usually resolves as the gut heals over a period of time.

The chapter states there is no conclusive evidence to support supplementation for CFS/ME management but multivit and EFA may be appropriate and vit D for housebound.

The case study subject is on 10mg amitriptyline. The mention of this for sleep and muscle pain is uncritical and does not mention side effects. The chapter takes a critical stance on CAM, explicitly stating there is insufficient evidence for homeopathy but sensitivity to patient beliefs is required.

There is no mention of CBT, GET, pacing, activity management, etc in the chapter.
 
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there is this contribution to Dietetic and Nutrition case studies:
https://onlinelibrary.wiley.com/doi/abs/10.1002/9781119163411.ch20

Chronic fatigue syndrome/myalgic encephalopathy
Lactose and gluten are a no brainer for elimination choices if having gut issues, as are grains.

I understand that amitriptyline slows down gut transit and therefore improves nutrient absorption, but it also affects protein metabolism, which may be an issue for some PWME as there are suggestions that amino acids are utilised as a fuel source

it also has same mechanism as an ssri, which may not be wonderful?
Does anyone have full access?
 
Does anyone have full access?

Yes - see post #777.

Wrt amitriptyline, the case study only has:

Further questions:
11. What is amitriptyline and why might this be prescribed?

Answers to further questions
11. Amitriptyline is a tricyclic antidepressant which blocks the uptake of brain chemicals noradrenaline and serotonin. In CFS/ ME this is often used to improve sleep and reduce muscle pain (NICE, 2007; McIntosh, 2014).
 
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