Giving M.E. A Place In The World: A HuffPost blog by Sonya Chowdhury

[AndyPR]

“Your brain has turned to mashed potato and your body is battling through Golden Syrup.”

That’s what the physical and neurological symptoms of myalgic encephalomyelitis (M.E.) feel like, according to Niamh on Twitter, while Lucy calls it “an unpredictable roller coaster ride without the fun.”

But what about the stigma and disbelief also faced by those with this hidden neurological illness? Isolation and exclusion are daily realities for the 250,000 people in the UK living with M.E., including 25,000 children and young people.

It’s the biggest cause of long-term school absence and yet many teachers and other professionals know little about M.E. and its impact. Despite living with this hideous illness, children are repeatedly having to explain what M.E. is and how it affects them. My son Danny has given up. He finds it too hard and hates being seen as ‘different’ because he is not in school full-time, often attending for part of a day. You can imagine how broken-hearted I was to hear my little boy, aged just 11, say to me, “I don’t feel my life is worth living. I don’t have a place in the world anymore.”

Before I joined Action for M.E., I had been a child protection social worker. I’ve seen and heard some terrible things but I am repeatedly horrified at the experiences that I hear of the ignorance, injustice and neglect faced by people with M.E.

Last week, we published the findings of our survey, undertaken with 270 parents of children with M.E. Not only did we find that one in five families had been subject to child protection referrals, a disproportionately high number, but that 90% of parents felt that their child had not been believed when talking to professionals about how M.E. affects them. In fact, almost all - 96% - said they felt that a lack of understanding about M.E. affected the support they received.

http://www.huffingtonpost.co.uk/sonya-chowdhury/giving-me-a-place-in-the-_b_17382960.html

 

[TiredSam]

Well that shut us all up

Where's the nonplussed emoji?

 

[NelliePledge]

this was at the bottom of the blog

HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We’ll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.

We’d love to hear your stories. To blog for the section, please email ukblogteam@huffingtonpost.com with the subject line ‘EveryBody’. To flag any issues that are close to your heart, please email natasha.hinde@huffingtonpost.com, again with the subject line ‘EveryBody’.

Join in the conversation with #HPEveryBody on Twitter and Instagram.

 

[Snowdrop]

Such a good article how does she justify putting afme's name with it.

Would like to be privy to the internal drama on that one.

AfME can have lots of good info for pwme but while attached to Crawley it's a toxic waste.

 

[Dolphin]

For some reason I thought her son was better than this:

My son Danny has given up. He finds it too hard and hates being seen as ‘different’ because he is not in school full-time, often attending for part of a day.

 

[Sean]

Half of these referrals were made by teachers, and a third by doctors. In a significant number of cases, these professionals wrongly assumed that the child’s parent was suffering from fabricated or induced illness syndrome, or FII (previously known as Munchausen by proxy).

I wonder where they got that idea from?

 

[Undisclosed]

M.E. is an illness that can affect anyone at any time. By taking time to learn more about it, and knowing where to go if it ever affects you or someone you know, you can make M.E. visible, and help those it affects to be seen, heard and respected.

For information and advice about living with M.E., visit www.actionforme.org.uk

I don't know how Sonya Chowdhury can say that when they restrict conversations about ME research in their own forum.

Hi everyone,

We’ve seen an increasing number of posts relating to M.E. research and petitions appearing in the forum recently. While we don’t want to tell people not to talk about these things, the purpose of M.E. Friends Online is peer support and friendship building for people affected by M.E. and so to stop the forum getting cluttered with threads about research updates and petitions - which can be offputting to people who are in a state of distress and looking for peer support - I’m creating this thread.

Any and all discussions about M.E. related research and petitions should now be posted here. Any posts about those topics that are made outside of this thread will be removed.

Please remember to keep all discussions polite, friendly and in line with the forum’s community guidelines, even if you don’t agree with someone else or the research in question.

Happy posting, everyone.

Joe
Forum Moderator [ed. note: joe.martin last edited this post 3 months ago.]

How is this kind of restriction making ME more visible and I would suggest it is totally disrespectful to people with ME to suggest that threads about research 'clutter' up the forum. It would cause more distress to have to hunt through one thread to find specific research. Talking and discussing pertinent research with peers is an important part of peer support.

What a load of shite.

I think the HuffPo article should be amended to:

M.E. is an illness that can affect anyone at any time. By taking time to learn more about it, and knowing where to go if it ever affects you or someone you know, you can make M.E. visible, and help those it affects to be seen, heard and respected.

For information and advice about living with M.E., visit www.actionforme.org.uk www.phoenixrising.me

 

[A.B.]

For some reason I thought her son was better than this:

Did she say that her son had recovered?

 

[Undisclosed]

Did she say that her son had recovered?

From her other HuffPo article:

After three and half years, Danny is doing much better. While he’s not recovered, he can now do some sport, though only at the expense of school and other activities. From September to April, he seems to get every bug going, probably thanks to his depleted immune system, and a recent stomach bug lasted four times as long as normal. Luckily, we are seeing less and less post-exertional malaise, the symptom that stops Danny’s body and brain recovering properly after expending any energy, even just watching TV

 

[slysaint]

I don't know how Sonya Chowdhury can say that when they restrict conversations about ME research in their own forum.

"We’ve seen an increasing number of posts relating to M.E. research and petitions appearing in the forum recently. While we don’t want to tell people not to talk about these things, the purpose of M.E. Friends Online is peer support and friendship building for people affected by M.E. and so to stop the forum getting cluttered with threads about research updates and petitions - which can be offputting to people who are in a state of distress and looking for peer support - I’m creating this thread.

Any and all discussions about M.E. related research and petitions should now be posted here. Any posts about those topics that are made outside of this thread will be removed.

Please remember to keep all discussions polite, friendly and in line with the forum’s community guidelines, even if you don’t agree with someone else or the research in question.

Happy posting, everyone.

Joe
Forum Moderator [ed. note: joe.martin last edited this post 3 months ago.]"

Time for me to come clean I guess.......

This was partly down to me posting links to research and petitions etc.............26 of my 41 posts were deleted without warning and when I protested I was thrown off AfMEs forum.:

This was my post:
"
Joe, I am sorry if I offended you. The comment was not personal. I did understand you were setting up the research thread, but had not realised that you intended to delete all previous research/news/petitions threads in the process.

I was a fully paid up member of Action for ME for the first 7 years or so of being ill and am fully aware of the need for a support forum.

I have always tried to post on a separate thread so that people could avoid it if they were not interested and am a little bewildered at the claim that these and a couple of others peoples posts were 'clogging up' the forum. But have nevertheless tried to abide by your decision as moderator.

But I think you need to clarify if any discussion about, treatments, what people have tried, why they have tried it (ie based on videos on Youtube, research/articles they have read) is also not allowed. (when I first joined this forum this did not appear to be the case)."

He did not reply to this on the forum. Shortly afterwards I received this:


"
Hello Slysaint,

My name is Joe and I am the forum moderator of M.E. Friends Online, Action for M.E.’s online forum dedicated to peer support and friendship. I am contacting you today to inform you that your access to M.E. Friends Online has been revoked. I will now explain why this decision has been made.

It has come to our attention that you have been sending unsolicited messages to our newly registered users who have joined M.E. Friends Online to seek support and friendship. These messages attempt to divert the users away from M.E. Friends Online to a different online forum. This is not in keeping with the spirit of keeping M.E. Friends Online a welcoming, supportive and caring place to be.

We have also been concerned to see that you publically posted a defamatory comment about the forum moderator comparing them to “North Korea” on March 24 despite the forum’s community guidelines stating: “Please respect the moderator - their job is to keep the forum safe and constructive so that everybody gets to have their say. Personal attacks or defamatory comments aimed at the moderator are not acceptable.”

We have also noticed that you have failed to engage with M.E. Friends Online in a manner that fits with the forum’s ethos of providing peer support and friendship. Your posts have been almost entirely focused on M.E. research and M.E. politics and have often been challenging in nature. As I know you are aware, there are other forums on the internet dedicated to the discussion of these issues.

We are sorry that we have had to take this action. However, since multiple breaches of our community guidelines and unsolicited messages to potentially vulnerable forum users have been recorded, we feel that it is no longer in the best interests of our forum users for you to continue accessing M.E. Friends Online.

Best regards,

Joe Martin

Action for M.E.
Communications Officer (Online Communities)

Tel: 0117 937 6621"

The 'unsolicited messages' were PMs I sent to people who were enquiring about specific treatments and suggesting they look on PR, and later when people started joining the new Parents and Carers forum I was simply informing them (not telling them anything else) that a new 'Parents and Carers' forum was also being set up on PR and that they might find it of interest.

But they(AfME) knew who I was from the outset; I even used the same name as I do here.

What they clearly didn't like was that other members were actually beginning to question things, which is why they shut it down and created the 'research thread', which has little/no discussion and presumably Joe is also able to delete any posts he doesn't like or that are not 'in keeping' with the AfME ethos.

 

[boolybooly]

A4ME has always tried to be collaborative but all that got us was PACE.

This is an adversarial situation, we have to defeat the opposing team and we need the world to see it. For that we need hard and truthful science.

The CMRC is something akin to a rugby scrummage with both sides getting up close and personal in the scrabble to acquire research funding.

I think the logic is something like... by "collaborating" we can attract more money... then we fight to divvy it up. What is the betting A4ME end up with the short end of the stick once again?

 

[arewenearlythereyet]

Well deleting comments and hiding the truth is how propaganda works ......luckily they don't rule the world....that's just their delusion.

My take on this: SC clearly is a "quid pro quo" type of person who doesn't like conflict and so by nature is inward looking. As such she is easily manipulated by the more controlling BPS crew and she will do as she is told to get a few crumbs from the table.

She is definitely not about looking after the care of members as her number one priority as a result.

It doesn't matter how many slushy articles she writes or interviews she attends .....the truth will eventually come to light that she was assistant propagandist to a devisive and manipulative power hungry group of individuals who are inept at their jobs and have a wayward moral compass.

I agree the only way to fight this is to turn this around on them and broadcast to anyone that will listen how mad this situation really is. We all need to become advocates in this respect.

 

[Cinders66]

Action for ME are full of on surface seemingly tough speaking articles and reports but in reality call for very little to actually change except more "awareness", understanding and benefits etc. They often use phrases like more research is desperately needed yet despite lots of well paid staff AFME have failed to attract it and refuse to demand more of state founders. For what SC is paid I think she should have achieved more.

I agree with boolybooly that collaboration can actually be seen as cowing down to the establishments way and it hadn't gotten us far.

 

[Barry53]

Action for ME are full of on surface seemingly tough speaking articles and reports but in reality call for very little to actually change except more "awareness", understanding and benefits etc. They often use phrases like more research is desperately needed yet despite lots of well paid staff AFME have failed to attract it and refuse to demand more of state founders. For what SC is paid I think she should have achieved more.

I agree with boolybooly that collaboration can actually be seen as cowing down to the establishments way and it hadn't gotten us far.

Candy floss advocacy - all fluff and no substance.

 

[NelliePledge]

this was at the bottom of the blog

HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We’ll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.

We’d love to hear your stories. To blog for the section, please email ukblogteam@huffingtonpost.com with the subject line ‘EveryBody’. To flag any issues that are close to your heart, please email natasha.hinde@huffingtonpost.com, again with the subject line ‘EveryBody’.

Join in the conversation with #HPEveryBody on Twitter and Instagram.

sorry for replying to myself
is there anyone who would be able/willing to do a blog on HuffPostUK would be an opportunity to put a different perspective and include different signposting. Im new to ME my story wouldnt be interesting enough but if anyone who has had ME for years and able to tell a story around GET impacting their health, or other poor treatment by current NHS approach I would be prepared to work with you to write up the blog if you dont have energy for that

 

[boolybooly]

I agree @Cinders66 , IMHO the widespread problems with recognising ME all began in US court rooms with legal battles over health insurance.

Its like tobacco companies working to oppose research on cancer.

The biopsychosocial model began IMHO as legal sophistry intended to bamboozle judges. In the legal context BPS proponents say whatever they can get away with.

They are incorrigible because the motive for their incorrigibility still exists.

BPS legitimises projection and victim blaming as a means to evade the cost of support and for the record as we all know that is no longer just insurance companies but includes our own governments.

The BPS team are driven by the profit in winning legal battles and that is the context in which we have to defeat them.

On that basis I feel representative organisations should not be collaborating with BPS proponents because it legitimises their blag, which has and deserves no legitimacy and was never as sincere as it pretends to be.

 

[Snowdrop]

Given the above posts I'd like to share an excellent link to a thread started by AndyPR on how to be effective at advocacy:

http://forums.phoenixrising.me/inde...ge-happen-for-human-rights.52693/#post-872566

I listened and found it full of really helpful information on how best to be an effective advocate.

AfME needs to be exposed. Their main source of legitimacy now comes from new and unsuspecting recruits.

They pay to have google display their site so it's a person's first point of contact when searching.

To me this article was a well crafted piece of advertising.

 

[slysaint]

Just to add that on the AfME forum there had been no objection to people (one in particular) posting links to some quacks Youtube vids or anything that supported the CBT/GET agenda. They really didn't like it when I said that AfME were funding Crawley (one of my 'challenging' posts) and took great exception to a thread about AfME funding Peter White, which the moderator deemed 'misleading' even tho the information is there on their website.

The members largely did not appear to know who these people were (to be honest neither did I not that long ago) but clearly Joe/AfME did; so why did they not want it pointed out to their members?

Carpets and sweeping under comes to mind.

 

[Undisclosed]

Joe Martin forum moderator -- fingers in many pies.

Experience

• 
  Communications Officer (Online Communities)
  Company NameAction for M.E.
  Dates EmployedOct 2012 – Present
  
  Employment Duration4 yrs 10 mos
  LocationBristol
  Action for M.E. is the leading UK charity for people with Myalgic Encephalomyelitis (M.E.) and their carers.
  
  M.E. is a chronic, fluctuating illness affecting 250,000 people in the UK. It may be diagnosed as Chronic Fatigue Syndrome (CFS). M.E. symptoms may include persistent exhaustion, muscle and/or joint pain, sleep disturbance, feeling ’flu-like and having problems with memory and concentration.
  
  Action for M.E. provides information and support, while campaigning for better services and more effective treatments and driving and investing in research – until our vision is achieved and M.E. is overcome.
  
  I lead on the creation and update of all content across our website as well as managing Action for M.E.'s online communities - including their discussion forums, Facebook, Twitter and LinkedIn.
  
  I also created the charity's YouTube presence and produce all their online video content, such as the awareness-raising video Speak Up For M.E., which generated over 1,000 views in its first 24 hours online (see below).
  
  Other duties include:
  
  - Assisting people who have M.E. over the phone and by email
  
  - Working with vulnerable adults and young people
  
  - Campaigning for better disability support and more awareness of neurological illness
  
  - Writing and proofreading articles for the charity's magazine InterAction
  
  - Continually seeking new ways to deliver an improved service to patients
  
  - Identifying and filling gaps in our information for patients, carers, family, educators and healthcare professionals
  
  - Sourcing opportunities for promotion and fundraising via online channels
  
  - Preparing press releases and case studies
  
  - Creating online campaigns using the latest software and social media technologies such as Thunderclap to maximize awareness-raising potential
  
  - Line-managing volunteers
  
  - Handling confidential patient and organisational data in accordance with charity policy
  
  - Producing webinars/livestreams to educate patients and healthcare professionals

Campaigning for better disability support and more awareness of neurological illness. -- somebody might want to point out to Joe that not allowing research and advocacy threads to 'clutter' their forums is NOT reaching this goal.

 

[Dolphin]

Action for ME are full of on surface seemingly tough speaking articles and reports but in reality call for very little to actually change except more "awareness", understanding and benefits etc. They often use phrases like more research is desperately needed yet despite lots of well paid staff AFME have failed to attract it and refuse to demand more of state founders. For what SC is paid I think she should have achieved more.

I agree with boolybooly that collaboration can actually be seen as cowing down to the establishments way and it hadn't gotten us far.

Action for ME ran a 1% campaign in the early to mid 2000s calling for £35 million to be spent per year on research, 1% of the cost of ME to the country. They had 200 people at a protest on a bridge. This was their 2nd attempt: they didn't get enough people they felt for their 1st protest. There was also postcards that you were to send to your MP and others and I think a media campaign .

It was all pie in the sky. Outside the US, lobbying generally has little effect on what illnesses get in the research budget as far as I can see. The MRC is kept separate and independent from politicians.