Tuesday, 16 January 2018

NICE stakeholder meeting for CG53

Today I attended the stakeholder engagement meeting for the NICE CG53 guideline on "CFS/ME".

Below I have copied the report I wrote afterwards, and the document I wrote with points I wanted to raise at the meeting.  (Both are also shared as Notes on my Facebook wall).


NICE stakeholder meeting for CG53: 16th January 2018
Impressions from the meeting by Sally Burch

The meeting started with some explanations of the process of review. It was explained that, in a break from the traditional process, this engagement meeting was being held before any scoping document was produced. There were 60 or so people in attendance and overall the meeting had a positive feel to it.

We were welcomed to the meeting by Philip Alderson, the Clinical Advisor for NICE.  Then Mark Baker, the Centre for Guidelines Director at NICE, explained about the guideline update.  One thing he said struck me as very important.  He said, "We are going to tear it up and start again. We won't allow it to look the same." I found this reassuring.  Indeed, he reiterated several times that the guideline was to be replaced in full. He also said that a re-naming of the guideline would be possible.  

Norma O’Flynn, the Chief Operating Officer for the National Guideline Centre, explained how NICE contract with the Royal College of Physicians to develop guidance. She said that there were a staff of fifty plus, and that they provided the technical expertise to support the guideline committee, and to manage the development of guidelines according to NICE processes.

Norma O’Flynn gave a time line for the development of the new guideline. This included a "Scope Stakeholder Workshop" on the 25th May, and a Scope consultation between 21st June and 19th July.  An advertisement for the guideline committee members will also run over the same period. The first guideline committee meetings should happen from November 2018, and as most guidelines take about 70 weeks to be developed, this should mean the guideline consultation taking place about April 2020.

Victoria Thomas, the Head of the Public Involvement Programme for NICE, told us that in this update they would be “starting with the perspective of the patient”.  She explained that there would be four patient members on the guideline development committee, and that individual patients (or carers) could apply as themselves, ie they do not need to be attached to a stakeholder group to be on the committee.

After a few questions from the floor, the different tables had time to feed back to NICE representatives.  Some pre-determined questions on the guideline were posed, and we were encouraged to look forwards rather than backwards. However, in our discussions some of the problems with the old guideline needed to be raised in order to highlight how a new guideline could be made better.

The table I was at managed to cover many important issues, and I think it is fair to say that the patient voice was most definitely being heard.  I brought with me two documents.  The first was a document I wrote listing issues I thought important for the meeting.  Most of these points were in fact raised by others at the table, meaning that I didn’t need to make each point myself.  The second document was a print out of Linda Crowhurst’s Facebook post entitled “An Honest Appraisal”.  I left both documents with the facilitator at our table, and also handed a copy of each document to Mark Baker after the meeting.

I left the meeting exhausted, but cautiously optimistic about how this development process might work.  Perhaps advocates more seasoned than I, will say that I am being naïve.  Perhaps I am being naïve, but I can’t deny it: this meeting went considerably better than I was expecting.  I guess the proof of the pudding will be in the eating, but for now I am pleased that I could say the things I wanted to say, and that my voice was heard.

Onwards and upwards? I hope so. 

With Mark Baker and Andy Hugh.


NICE Stakeholder Engagement Meeting for CG53 16th January 2018
Points to consider from Sally Burch 

Patient Representative for Hope 4 ME & Fibro NI

1.    Remove all reference to “fatigue” from the name of Myalgic Encephalomyelitis.  The current prefix of “chronic fatigue syndrome” gives a misleading impression about the aetiology of the disease, and further encourages GPs to use the “CFS/ME” diagnosis for idiopathic fatigue. The disease of ME should not be inadvertently conflated with lifestyle fatigue, nor fatigue originating from other undiagnosed issues.   

2.    Remove CBT & GET from the CG53 guideline. This should be with immediate effect and with substantial publicity. Reason: CBT & GET no longer have a supporting evidence base for long-term efficacy, and there is now considerable evidence indicating harm from their implementation. Further these therapies are based on an outdated psycho-social premise for ME that is without evidence to support it.

3.    Advice given to the patient should be honest and transparent. Patients would prefer to know that their condition is potentially life-long, debilitating, and requiring major life-style change.  By avoiding an early suggestion of ME as a diagnosis, patients are left vulnerable to doing serious harm to their long-term condition by their own natural attempts to continue with their current lifestyles. For some this lack of advice means plunging into irreversible and severe ME.

4.    Patient Protection from HARM must be paramount:  Appropriate advice to protect the patient from iatrogenic harm should be included in the guideline. This is especially important for the most severely affected. I suggest:
a.    Advising GPs to facilitate requested home visits for moderate and severe ME patients. GPs should be aware that they may not observe their patients’ problems first hand, due to the delayed nature of symptom exacerbation in ME. Appearing “okay”, on a previous visit does not mean that the visit was without harmful after-effects.
b.    Advising Social Services that manifestations of ME could be mistakenly regarded as a safe-guarding issue. Eg Patient may be seen in a darkened, sound-proofed room, with carers who may appear over-protective. This is to be expected when ME is severe.
c.    Advising GPs to list the potential manifestations of ME in their letters to schools, social services and employers. This should include advice on the potentially long-term nature of ME, with specific advice to avoid any prescriptive “phased return” to normal activities.
d.    Advising hospital staff, including A&E departments, on the need to accommodate ME patients as they seek to avoid sensory over-stimulation by normal hospital activities. Requests to be placed in a quiet area with low lighting should be honoured with minimum fuss.
e.    Advising all professionals to consult with severe patients (or their spokespersons) on each patient’s specific needs and considerations, prior to any non-urgent interaction. This due to the potential for simple, normally insignificant, events to cause real harm to the patient. Risk assessments.
f.     Advising all health professionals to carefully weigh the need for additional medical investigation or procedures with: i) the need to detect or treat a comorbid condition, ii) the potential harm caused by the procedure to the patient’s ME severity and iii) the patient’s views.  However, no medical investigation should be ruled out simply because of an existing diagnosis of ME.
g.    Advising GPs that “Rest and Recuperation” is appropriate advice for patients suspected of having ME. Assuming no properly evidence-based treatments are yet available, the advice to rest as much as is required to alleviate symptoms, should be given.  Ideally, this should be accompanied by practical advice on how to reduce energy expenditure, and should be suggested as a precautionary measure even prior to formal diagnosis.
h.   Management advice on the use of Heart Rate monitors should be expanded to include warnings. GPs often don’t recognise that ME patients’ heart rates respond inappropriately to exertion.  The current exercise advice of 50-70% of maxHR requires normal individuals to take a brisk walk or gentle jog, yet an ME patient might hit this range by simply sitting up in bed. Unfortunately, a busy GP may not recognise how differently ME patients are affected by exertion, and so suggest a “brisk walk” for his/her patient.  The aim of any heartrate monitoring strategy for ME patients should be to keep heart rate low.

5.    The make-up of the Guideline Development Committee is going to be critical to the nature of the ultimate new guideline.  Patients need assurance that the selection of this committee is free from bias. I am of the view that:
a.    Psychiatry should play no part in creating the primary guideline for ME.  ME has a physiological aetiology.  The issue of counselling for secondary mental health issues should not require a psychiatrist to sit on the development group.
b.    Those who benefit financially, or reputationally, from the continuance of the current CBT/GET treatment paradigm should have no place on the development group.
c.    Patients and carers who have direct experience of Severe ME should be consulted on the care advice offered for patients with the extreme sensitivities of Severe ME.
d.    An individual with clear understanding of statistics and research methodology should be included in the group. This is to ensure that an appropriately critical approach can be utilised on the papers to be considered as evidence. This individual should also consider any published criticisms of existing peer-reviewed papers.
e.    Those who produced the existing guideline should be excluded from the new development group, in order to ensure that a new approach can be properly considered.

6.    When the new guideline is issued, there should be extensive publicity through out the medical world highlighting the change of approach.  This should include an insistence that the discredited psychosocial approaches to ME are abandoned by all health care practitioners.  References to the psychosocial approaches of CBT and GET should also be removed from all health service literature and webpages.

NICE must leave no room for doubt about the physiological nature of ME.

Note: I was lucky to have the internet & other patients to advise me to stop taking the “brisk walks” advised by my GP. I was also fortunate to gain improvement to my quality of life by taking an off-label anti-retroviral drug privately.  BUT healthcare should not rely on luck!  I hope the new NICE recommendations for ME will soon be ones that patients can turn to with confidence. 

[Edited 18th January to add the picture and this link to Linda Crowhurst's piece "An Honest Appraisal"]

Friday, 12 May 2017

Why? Just Why?

It's one thing to be told you have a disease that is not yet fully understood, while doctors do their best to seek out treatments.  

It is quite another thing to be told your life-altering illness is only a self-inflicted burn-out, and that you just need to take more exercise and think more positively.  I joke not.  Many patients report this type of attitude from their medical professionals.

The problem is this: NICE guidelines recommend Graded Exercise Therapy & Cognitive Behaviour Therapy as the best available treatments for "CFS/ME".  

Some doctors interpret such advice as: "Get a move on!" and "Stop dwelling on things!"  

Do these doctors not realise that ME can be serious? Indeed, so serious that it can render the sufferer helpless and in a an enduring state of physical misery? 

Do these doctors not recognise that exertion can make the health of fragile patients plummet? 

Do they not notice?

If not, why not?  

The ME community has been saying for years that exertion harms their health - sometimes permanently.  Yet still the NICE recommendation for exercise remains. 

And the newly ill are still given advice that could cause them long term disability.  

And time goes on and NICE guidelines are still not changed.

We are told the guidelines will be looked at in 2017 to see if they need to be reviewed, but there appears to be no urgency to this process.  

We also have no reassurance that the experts being consulted on the decision are cognisant of the harms of exercise for ME.  Are these reviewers taking new research seriously? Are they prepared to ditch evidence from trials that fail to stand up to scientific scrutiny? 

And if so, why are changes happening so slowly? 

Now, here we are in the month of May again.  Still trying to "raise awareness", still blogging, still protesting, and still campaigning.  

Yet little has changed for patients in consulting rooms across the country.

Why is that?  Why?  Just Why?  


PS I read somewhere recently: If you want to change a person's established view point, that reasoned arguments and referenced literature have less effect than simple questions.  So I have chosen not to expand this post with detail, but simply to ask the question "Why?".

My post for ME Awareness Day 2017 & #May12BlogBomb

Other posts can be viewed on the Link List for #May12BlogBomb 2017

Link List for #May12BlogBomb 2017


A new collation of blog posts written for May 12th Awareness Day 2017.  

If you would like to submit a blogpost to the list? Please follow this link.

If you want to know more on the the history of May 12th as Awareness Day?  See this post from ME Advocacy.

If you are sharing blogposts on social media, please use the tag #May12BlogBomb - the tag to amplify the voice of all May Awareness Bloggers!

My Awareness Post:

Just ME: Why? Just Why?

Guest Posts on Just ME:

Just ME: Guest Post from Merely Existing is ME - Onwards

Just ME: Guest Post by Wendy: Courage

Posts on Independent Blogs: 

Chronically Siobhan: Heartbroken

Crazypurplemama: It's all about ME 

February Stars: Why we need an awareness month for Fibromyalgia, Lyme disease & ME/CFS

February Stars: 5 things I wish people knew about Fibromyalgia & ME/CFS

Huffington Post Melanie Schickedanz: "12. Mai - Internationaler Tag des Chronischen Erschöpfungssyndroms" (German)

Laura's Pen: ME Awareness Day - A comic, a poem, a video diary and a word cloud

Lennae's World: Walk for ME! 

Lennae's World: ME Awareness 2017

Liebjabberings: Celebrate May 12 International ME/CFS AWARENESS Day

Lightening the Shadow: Darla's BedFest Submission: Memoir Excerpt

Little Wings: MEme is ready for the Dublin Protest

Living with ME - My husbands perspective

ME/CFS Self-Help Guru: What Living Well with ME/CFS Really Means

Mindfullly Evie: The stories behind what you can't see

My A-Z of M.E. - May 2017 awareness month

Not Just Tired: Simple ways to raise awareness of ME/CFS

StopGET: Missing More, the exercise broke me

SupineSublime: Textling #78

The Martian Princess Chronicles: 3 Reasons Why I Am Grateful To My Fibromyalgia

This Spoonie Speaks: EDS Awareness Month Blog Challenge

Tips for ME: What Would Florence Do?

Verbena Days: ME Awareness Month

Previous #May12BlogBomb Link Lists can be found on these pages:

2016 - 2015 - 2014 

Thank you to all the bloggers past and present who have contributed to this endeavour.  

Guest Post from Merely Existing is ME: Onwards

Guest post by MerelyExisting is ME for #May12BlogBomb 2017


Previous #May12BlogBomb posts:
2016 I wish...
2015 We Are Warriors 

Onwards towards new realities

Firstly I would like to say a big hello to everyone as I’ve been too unwell to manage any attempts at social media for the best part of a year, but I really wanted to make contact and post (a brief) something for this year’s ME Awareness campaign.

So what’s happening? I do feel so out of touch with everyone and everything…
For me its three and a half years now since my world turned upside down from ME/CFS and I honestly had no idea just how unwell and incapacitated it is possible to feel, BUT with very aggressive rest and extreme pacing I am sometimes able to manage brief spells of feeling slightly less deathly… HOORAH !

Prior to December 2013 I was working full-time in healthcare and now I am about to enter ill-health retirement almost two decades too early, which is not something I ever imagined happening.

I don’t know what the future holds but I am learning a new reality, to take and deal with each minute, hour, day as it comes, and I keep hope for those moments when symptoms ease a little.

Myalgic Encephalomyelitis is REAL, its PHYSICAL and it destroys lives so please help in raising awareness and support… so that we can start living again and not just existing.

#May12BlogBomb 2017

MerelyExisting is ME @tweetsforMECFS 

Guest post by Wendy: Courage

Guest post from Wendy for #May12BlogBomb 2017 on courage and how it relates to having a long term debilitating illness:


Courage! What makes a king out of a slave? Courage! What makes the flag on the mast to wave? Courage! What makes the elephant charge his tusk in the misty mist, or the dusky dusk? What makes the muskrat guard his musk? Courage! What makes the sphinx the seventh wonder? Courage! What makes the dawn come up like thunder? Courage! What makes the Hottentot so hot? What puts the "ape" in apricot? What have they got that I ain't got?  Cowardly Lion Monologue on the Wizard of OZ

Courage is the ability to do something that frightens one, as in "she called on all her courage to face the ordeal."  Or strength in the face of pain or grief, as in "he fought his illness with great courage."

mean mental or moral strength to resist opposition, danger, or hardship.
Courage implies firmness of mind and will in the face of danger or extreme difficulty. “the courage to support unpopular causes”
Mettle suggests an ingrained capacity for meeting strain or difficulty with fortitude and resilience. “a challenge that will test your mettle”
Spirit also suggests a quality of temperament enabling one to hold one's own or keep up one's morale when opposed or threatened. “her spirit was unbroken by failure”
Resolution stresses firm determination to achieve one's ends. the resolution of pioneer women”
Tenacity gives birth to stubborn persistence and unwillingness to admit defeat. “held to their beliefs with great tenacity”

You may not always have a comfortable life and you will not always be able to solve all of the world's problems at once but don't ever underestimate the importance you can have because history has shown us that courage can be contagious and hope can take on a life of its own.  {Michelle Obama}

When you live with chronic illness, every aspect of life takes on a new dimension. Your daily decisions and choices are examined through a new lens, and you often find yourself carefully weighing the ramifications and possible outcomes of your choices. But, wait, wasn't this the way it always was? This is something all intelligent and responsible adults do?  However, living with Myalgic Encephalomyelitis broadens the scope of that decision making process. The question isn't only how will this decision or choice affect you, but also, how will it affect your illness which in turn affects you and the choices and decisions you continually make.

“Catastrophes create heroes, people who know how to deal with trouble. They come in all shapes and sizes to take the lead: a medical worker, a lottery winner, a neighbor, bystanders, a priest, a child”

The notion of choice occurs at many levels. We have little or no choice about the thoughts which randomly occur to us. We do have choice about how we choose to act, that is, what we do about the thoughts. We also have choice about how we feel. Not choice about the feeling we have now - that is the result of past choices, but about the feeling we have next. We can be sad, and choose happiness, angry and choose love, etc. There is not any "right" way to "be," just possible ways - each with consequences. From a purely pragmatic perspective - evaluate the choices you have made, see what the effects have been. What is it that you want? What choices are you prepared to make to support those ideals ? Some things achieve what we want, others don't.

“Success is not final, failure is not fatal: it is the courage to continue that counts”.  {Winston Churchill}

Living with a complex chronic illness such as M.E. is a search for quality of life. One needs to be well informed about their illness in order to manage their physical symptoms as best one can. However, one also needs to learn to live with a certain amount of ambiguity and uncertainty. Striving for a balance between work and play, rest and activity, relationships and solitude, and grief and joy, the challenge Myalgic Encephalomyelitis means we must come to accept our limitations and appreciate our gifts.

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” {Nelson Mandela}

Obviously, this is a demanding aspect of living with chronic illness. It's also the measure of your courage. Living with illness affords ample opportunity to be courageous in living your life to the best of your ability. Because when limitations and diminished control over the effects of illness are part of your daily life, your choices and decisions become the stuff from which courage emerges. The fact is, if you're living with Myalgic Encephalomyelitis you are courageous. In the process of meeting life's challenges, you have learned and are continuing to learn how to meet your fears and move beyond them. 

“There Is Courage In Being Vulnerable.  Courage is borne out of vulnerability, not strength.It is when we are at our weakest we find our strength through courage. 

Being real, being raw, being authentic, laying bare your flaws and discovering your voice can have massive power. Standing in who you are, owning your strengths and weaknesses and accepting who you are is  amazingly powerful. Most people have been raised to believe that vulnerability equals weakness. But it doesn’t. There is incredible strength and courage in vulnerability. We must live in the space of vulnerability. Vulnerability is not just about fear and grief and disappointment it is indeed the birth place of everything we are hungry for : joy, creativity, faith, love and innovation.

“Vulnerability sounds like truth and feels like courage. Truth and courage aren’t always comfortable,but they’re never weakness.”  Brené Brown,

This is an inspiration for all of us around the world. We can not be invisible any longer without risking our lives. We need proper care and medical treatment, funding for biomedical research, education for those in the medical profession who need to learn more in order to treat us but more importantly we need acceptance and understanding in our communities because our disease is so complex one can only understand it by contracting it themselves.  We need to show that this can happen to anyone.