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Forward ME
Minutes of the meeting held in Residence 1
House of Lords
Wednesday 7 February 2018 starting 2pm
Present:
Countess of Mar (Chairman), Dr Charles Shepherd (ME Association), Dr William Weir, Bill Kent (reMEmber), Tony Crouch (25% Group and Tymes Trust), Sue Waddle (MERUK), John Davies (MERUK), Christine Harrison (BRAME).
You can find the attachments referred to below on the Forward ME website
1. Apologies
Apologies had been received from Janice Kent (reMEmber), Cath Ross (25% Group), Tanya Harrison (BRAME), Jane Colby (TYMES), Dr Paul Worthley (ME Trust), Hannah Clifton (ME Trust), Gareth Tuckwell (ME Trust) and Clare Ogden (AFME). Sue Waddle introduced Jonathan Davies who had recently joined MERUK as a trustee.
2. Minutes of meetings held on 5 December 2017 and 10 January 2018
The minutes of both meetings were agreed to be correct.
3. Matters arising
3.1 Green Paper on Mental Health Services for children (item 2 of 10th January meeting). The Chairman said she had just received a paper on the subject from Jane Colby (Action for ME had also had input) which she read out to the meeting.
3.2 Main points from Jane’s paper which had been based on one written by Action for ME:
– ME is not a mental health condition, but children are often referred inappropriately to CAMHS. Having to attend school can be a key cause of relapse in children with ME which has a devastating effect on the children and the families.
– ME is the biggest cause of long term sick absence from school. A significant number of children and young people experience co-morbid anxiety and distress from coping with the stigma of ME and educational pressures.
The Chairman asked members if they were content for Jane to put that forward on behalf of ME. There were no dissenters, but Tony Crouch said he had not had time to study the paper. He would do so and let Jane know (see attached the Chairman’s submission of 26 February 2018 on behalf of Forward-ME).
3.3 Chairman’s PQ re children with ME. Tony said the answer was a bit worrying (no special training for the Mental Health Leads in schools). Others agreed.
3.4 The Chairman said she had been in touch with the Children’s Commissioner. Should she ask her to meet us? Members agreed unanimously.
4. Workshop on review of NICE Guideline 16 January 2018
4.1 The Chairman asked how the “round table” discussions had gone. There was general agreement that they had been successful. The Chairman said she had pointed out that the Americans had now removed CBT and GET from their guidance. It was unfortunate that Anglia ME Action had put on their website on 22 January 2018 that they doubted CBT and Graded Exercise would be taken out of the new guideline.
4.2 Christine Harrison pointed out that what some services are calling “GET”, when described, were closer to pacing. Charles Shepherd agreed that a number of the NHS services were providing pacing but were calling it GET to indicate they were complying with the current NICE Guideline. Sue Waddle pointed out that doctors received an enormous amount of information about ME. It was probable that they spotted the words “Graded Exercise” and on that basis were telling patients to take vigorous exercise.
4.3 The Chairman said Jane Colby had sent a lot of comment on the workshop which she read out. She would arrange for members to receive copies (see attached).
4.4 What the illness should be called. There had been considerable discussion about this at the workshop. Members discussed this at length. They highlighted the confusion surrounding the different names. The Chairman said the general consensus seemed to be to get rid of the term “CFS”. Dr Charles Shepherd said we would need to feed these observations back to the NICE Review committee. What to call the illness and diagnostic criteria would take up a lot of their time.
4.5 Dr Weir said that the three most convincing papers on the biomedical nature of the condition, which psychiatrists cannot refute, including that on anaerobic thresholds, all use the term “CFS”. This could cause difficulty for the Review team. The Chairman commented that the new guideline should explain in detail why the term “ME” is to be preferred. Dr Charles Shepherd referred to the IOM report which used the term SEID. Many people did not like that name but liked the clinical definition in the IOM report.
4.6 Referring to the scope of the review, Christine Harrison said the wording and phrasing of the scope was absolutely vital to ensure that all relevant research and information was included and reviewed – for example, that all research papers relating to exercise were part of the review – ME and exercise and CFS and exercise, not just ME or CFS and GET. Patient evidence also needed to be given a much higher priority this time.
4.7 Dr Weir said that the “D” IN SEID stood for “disorder” – an unspecific term – whereas research had shown that in ME there is inflammation in the central nervous system, which means that “encephalomyelitis” is accurate. [ME Association Note: ‘SEID’ stands for Systemic Exertion Intolerance Disease.]
4.8 Dr Charles Shepherd and Sue Waddle asked whether, pending the completion of the Review, NICE might issue a statement about CBT and GET being questionable. The Chairman said she would write to Prof Mark Baker about this.
4.9 Tony Crouch read an extract from Professor Mark Baker’s reply to correspondence from Invest in ME Research. This reiterated his position that the existing guideline would not be withdrawn pending the issue of the new one but that he had been struck by the reports at the stakeholder workshop of misuse of the current guidance. He was considering any action that NICE might take. This reflected the discussion in the small group of which Tony was a member at the workshop where it was strongly suggested that if the guideline was not to be withdrawn a covering message should be placed on it in order to prevent further harm.
4.10 The Chairman announced Carol Monaghan MP (Scot Nat, Glasgow North-West) had managed to secure a 30-minute debate on PACE in Westminster Hall on 20th February. It was probable a junior health minister would also be present. She had given Ms Monaghan a briefing. Dr Shepherd and Dr Weir would be going to meet her at the end of this meeting.
5. Royal College of General Practitioners Conference, Glasgow, October.
5.1 The Chairman said Clare Ogden had informed her she was still waiting to hear from the organisers about Forward-ME getting a stand at the charity rate. Clare would forward details as soon as they were to hand. The Chairman said Forward-ME hoped to have a board for posters etc. Charles said that unfortunately the stands might be quite small. Tony Crouch said Helen Brownlie from the 25% Group lives in Glasgow. She and some carers of severely affected people who had previously presented to the Scottish Parliament would be in a good position to assist.
6. Children with ME
6.1 The Chairman announced that Action for ME were launching a project in Scotland looking into the problems of children with ME there. They would be contacting children, families and schools. We had already discussed the Green Paper on children and mental health at item 3 above.
7. DWP
7.1 Christine Harrison reported on a meeting with IAS (Atos) in January, which was a constructive day. She continues to raise concerns and issues with Capita, who would be attending the next Forward-ME meeting.
8. Any other business
8.1 Proposed letter to the Times. Dr Weir handed out a revised copy. Charles Shepherd commented that the Times was unlikely to accept more than 200 words. Dr Weir said the purpose was twofold; first to increase public knowledge and secondly to provoke response. He referred again to the incontrovertibility of muscle biopsies. The Chairman said Jane Colby had offered to precis the letter; could she send it to her? Dr Weir agreed and said he would e-mail a revised version to members. Members discussed the content at some length (The letter was submitted on 18 February but not published – see attached).
8.2 Sue Waddle returned to the subject of the PACE trial. She suggested that the amount of money wasted on it should be a subject for the Parliamentary Accounts Committee. The Chairman commented that she had already approached the PAC and she had received a sympathetic response, but no action was to be taken.
8.3 Christine Harrison spoke about SNOMED (the international successor to Read Codes) and ICD11. She explained again how she had fought for many years on these issues, and to get formally noted on everyone’s medical records the medical conditions diagnosed, using the appropriate Read or SNOMED code, along with the severity level or stage of their illness. This would provide a means of obtaining epidemiological data and health and care needs of patient groups, including those with neurological ME, at both local and national levels.
8.4 Dr Weir referred to an interesting paper from Nigeria which shows a considerable incidence of an ME-like illness there.
9. Date of next meeting
28th February, 2pm. Dr Gargan from Capita will attend. The meeting after that will be with the Children’s Commissioner. Meeting closed 3.15 pm.
You can find the attachments referred to above on the Forward ME website
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“Many people are alive but don’t touch the miracle of being alive.” ~Thich Nhat Hanh
“Who are you? No, really. Who are you?”
I stood at my bathroom mirror, towel twisted around my head, inspecting my own reflection. A woman I hardly recognized looked back at me with empty eyes. Empty mouth. Empty insides.
“Who are you?”
Silence.
“What do you want?”
Nada.
“What are you thinking?”
Zilch.
I sighed and reached for the toothbrush. The truth is, I’d been there before. That empty-sad feeling. The feeling of not quite fitting in. Not quite feeling fulfilled.
Before, I’d brush it off. Dig deep, push through, move on.
I’d say everything was just fine. It sure looked just “fine.” After all, I was a fully functional adult. Everyone said so.
I had my education, a career, a husband, kids, a house.
I was chipping away at that mortgage and student loan debt. They’re the good kinds of debt, you know.
I’d checked the boxes on life’s to-do list. Isn’t this what we should all be aiming for?
I didn’t know it yet, but this time would be different. That moment would be the turning point after too many years convincing myself that I didn’t know the answer to my questions.
This would be the moment of renewal, reclaiming the missing pieces of me and offering them the loving care they deserved all this time.
Later that day, kneeling down at the washing machine, ruminating about I don’t even know what, it hit me: a full-body NO. This is not what life is meant to be, I thought.
It was a no to this being my everyday experience. No to living on autopilot. No to feeling empty. No to not even recognizing myself.
It was a punch through the chest. My eyes welled with bottled up tears, and I had the distinct feeling of just wanting to go home.
I’d been pushed over the edge of the cliff I’d tiptoed for years.
The real surprise, though, was the laughter that followed. It tickled my throat and escaped through bursts of tears. I reached up to wipe my cheeks and found a smile there.
The relief of seeing all of this and finally saying, “No!” was the most amazing thing.
I spent the next few days in quiet observation, breathing through the pins and needles of waking up.
At first, I didn’t know what to make of the mixed-up, muddy feelings that met me. Was this anguish? Euphoria? Confusion for sure, but I felt I had no choice but to keep going.
So, I walked softly and resisted the urge to define this.
The more intently I listened, the more clearly I started to hear and feel yes and no. They curled through my day, winding themselves around everything I’d just accepted as “the way things are.”
The no’s felt empty, hallow, fake. It felt like acting. It was resistance and alarm bells and forcing. Even though it had been my usual mode of operation, being in a state of no also started to hurt.
But yes…yes felt alive. It was light, expansive, and exciting. I felt energized and creative whenever I was there. The best part was, it was easy.
Of course, as any of us would, I wanted more of the yes and less of the no. I grabbed a sheet of paper and drew a line down the middle. Two columns: yes and no.
Beside yes, I wrote “lights me up.” Beside no, “drains me.”
Then, I listed all of the yes’s and no’s I felt during the day. It was nothing fancy, just a quick word about what I did and how I felt. By the end of the week, I’d created my personal manual for living.
It was my blueprint for calling my lost parts back.
There on that sheet of paper, in my own handwriting, were all the things I’d always known but didn’t yet see.
I saw that there are naturally things that will be unpleasant or less than thrilling, but that my being doesn’t need to feel that way. There is so much opportunity for yes if we’ll allow for it. So, I started to follow yes with more intention.
I bought a stack of composition books and carried one with me everywhere.
I started to draw again after almost thirty years.
I wrote a poem, and then another and another.
I started writing children’s stories.
I fed my spirit good music, sunlight, plenty of color, and lots of space.
And I remembered that lightness is like oxygen for your soul.
Now I see that that face, those eyes, those insides, they weren’t empty. They were aching with the kind of deep burn that comes from turning your back on yourself, walking away, and never looking back. I’d just numbed it is all.
I’d let myself get too busy to think of things like who I am, what I dream, and what I believe more than anything.
I retreated into my day-in-and-day-out and identified with the little dramas, whether they were mine to start with or not.
It wasn’t all gloom, mind you.
I was ambitious. Driven, dedicated, motivated. A real go-getter and other fully functional adult-type things.
I was also grateful for life’s many blessings and aware of the countless privileges bestowed upon me that had nothing to do with my work ethic or worth as a person.
Like I said, I was fine. (But not really.)
I was aimless and stuck in a close enough approximation of inner peace and freedom. I existed as a fragment of me.
Looking back, it was on that day that I decided that even if I was fine, fine was not enough.
Fine is not thriving.
Fine is not complete.
Fine is not what I came here to experience, and I couldn’t face another day of pretending to be here and whole.
My sense of wonder and magic, my awe, my creative spirit, and my light had been calling out to me all this time. Only I couldn’t hear it until then.
I don’t know if I’d been more scared or ashamed of who I was after casting away these important parts of myself. Maybe I didn’t recognize them as my own. Or maybe I thought this was how it’s supposed to feel. It’s just how things are—you can’t be successful and free, whole and at peace.
Yet, there they were this whole time, turning toward me like flowers turning toward the sun. They held tight to the cracks in this facade I’d created.
I suppose they never were lost, just watching and waiting until the day I set down my resistance and welcomed them back home.
Calling my lost parts home didn’t happen in one grand, sweeping gesture. It took a lot of little moments. Awkward, wobbly baby steps that took me sideways and backward just as easily as forward.
It took me a while, but I finally figured out that when you feel a yes, you follow it. And bit by bit, all those little steps coalesced into what from the outside looks like the one moment I “took the leap.”
If any part of my story resonates with you, then maybe you know what it feels like to pretend to be here and whole. And maybe you’ve had those little moments of clarity and mini-epiphanies that “fine” is not what you came here to experience.
Maybe you’ve heard your lost parts knocking at your door asking to come home. And maybe you’re ready to listen.
It may seem like an impossibly long journey when you’re in the walking sleep of I’m fine, but calling your lost parts back and welcoming them inside is as easy as following what lights you up one baby step at a time.
Leslie is writer and artist who hopes to leave the world a little brighter than she found it. Her people are soul-searchers, deep feelers, and big-hearted dreamers that crave inner peace and inner truth. Download her free ritual for receiving to bring true healing, inner peace, and lasting joy into your life.
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