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Form letter to NHS England re:ME, MUS and Functional Somatic Syndrome

Borrowed this info from the ME Research UK Facebook page - link to post https://www.facebook.com/MEResearchUK/posts/1524760864235832
With the aim of improving mental health and wellbeing, the Joint Commissioning Panel for Mental Health offers guidance on the provision of services for mental illness in England. Its recent guide on “medically unexplained symptoms” (http://bit.ly/2kvqH15) includes CFS/ME, which is described as a “functional somatic syndrome”.

This misrepresents an illness that the World Health Organisation classifies as an organic neurological disease, and in which numerous scientific articles have reported pathological changes.

If you have similar concerns, and live in England (where this document applies), the 25% ME Group has written a very helpful pro forma letter to the CEO of NHS England, which you can download from their website (http://bit.ly/2pl8pTc) and adapt for your own use. They also have an information sheet with more about the issue (http://bit.ly/2q53pQt).
 

Yogi

Senior Member
Messages
1,132
I haven't kept in touch with all this JCPMH stuff but this is a good letter from 25%MEG. It may be worthwhile for 25% Group to circulate this via MEAction so everyone in England is aware and can write in.

I don't think they willl remove the document as requested in the last part and I am not sure if that is reasonable ask. However the reference to ME/CFS should certainly be removed and correction circulated.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
They should add about the UK blood and tissue ban from CFS, PVFS ME sufferers.

If patients with less severe presentations are brainwashed by CBT to 'feel better' they can then donate at a blood donor centre and claim they now 'feel better', and go ahead and donate. :eek:

If the UK state really thought CBT/GET was the way, they would not enforce restriction on blood tissue umbilical cord ban.

Every single advocacy group needs to challenge people on this, ideally on TV or 'You Toob'.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
They should add about the UK blood and tissue ban from CFS, PVFS ME sufferers.

If patients with less severe presentations are brainwashed by CBT to 'feel better' they can then donate at a blood donor centre and claim they now 'feel better', and go ahead and donate. :eek:

If the UK state really thought CBT/GET was the way, they would not enforce restriction on blood tissue umbilical cord ban.

Every single advocacy group needs to challenge people on this, ideally on TV or 'You Toob'.

I think this information needs to be checked as I don't think it is current.

I was recently in a hospital when a close relative died and a nurse asked me to sanction organ donation. I was given a list of diseases that would prevent the patient from being a tissue donor and ME was not listed. I have since checked and I believe that the ban has been lifted. It certainly wasn't included on the list that the hospital gave to me.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
This letter is very timely!

Here is an article that is dated May 2017 that is in the Lancet:

It is headed, 'Low dose imipramine for functional somatic syndromes'

The introduction to the article informs the reader that CFS is one such example of a FSS.

Functional somatic syndromes are groups of symptoms without a clear medical explanation (also known as medically unexplained symptoms). They include chronic fatigue syndrome, fibromyalgia, and irritable bowel syndrome concomitantly; pain is commonly reported. Functional somatic syndromes represent a major challenge for health-care systems, professionals, and patients in terms of diagnosis and treatment. No strong evidence base exists beyond the experience and expertise of practitioners.
The rest of the article is behind a paywall.

It would be useful if someone could access it for us.

This needs to be challenged as it is misleading the whole of the UK's medical profession.
 
I think this information needs to be checked as I don't think it is current.
From https://my.blood.co.uk/knowledgebase/Index/C
Screen Shot 2017-04-27 at 08.41.23.png

and
Screen Shot 2017-04-27 at 08.42.21.png
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
The recent Lipkin gut bacteria paper had a paragraph referring to CFS and FM as a functional somatic syndrome.

Mr Lipkin works for the US Government and his colleague of 25+ papers they've done together, Ms Hornig, is trained as a Psychiatrist.

Together, they appear to be going down the path of converting the potential science of inflammatory ME into a neuropsychiatric illness called ME/CFS (via weak CFS entry criteria), which by chance, would make the UK MRC very happy as converting ME into a mood disorder exonerates Wessely and Crawley and PACE, and lastly UNUM and everyone else.

Note also that PACE apologists AFME, invited American Lipkin to speak at their UK conference.
 
Together, they appear to be going down the path of converting the potential science of inflammatory ME into a neuropsychiatric illness called ME/CFS (via weak CFS entry criteria), which by chance, would make the UK MRC very happy as converting ME into a mood disorder exonerates Wessely and Crawley and PACE, and lastly UNUM and everyone else.
Interesting. Your evidence for this is?
 
In the discussion section of the paper, https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-017-0261-y#Sec10
The prevalence of IBS co-morbidity is high in individuals with ME/CFS (35–90%) [4, 5, 6]. The underlying link between these conditions and the directionality of the association remains to be addressed. ME/CFS and its underlying pathophysiology or the emotional responses to illness in these individuals may predispose ME/CFS sufferers to IBS. Anxiety (especially health anxiety) and depression are common in ME/CFS [23], and anxiety and depression increase the risk for IBS onset twofold [24]. Alternatively, the association between ME/CFS and IBS could arise as a result of overlapping pathophysiological mechanisms that contribute to the development of both syndromes. For example, infectious gastroenteritis caused by bacterial (Campylobacter jejuni, Salmonella enterica, Shigella sonnei, Escherichia coli 0157:H7), viral (norovirus), or protozoal (Giardia lamblia) pathogens increase the risk of post-infectious IBS [25]. ME/CFS is often reported to develop following an acute infectious illness, and post-infective fatigue states have been reported following bacterial, viral, and protozoal infections [26]. Acute giardiasis, for example, is associated with both increased risk of post-infective IBS (relative risk = 3.4 [95% CI 2.9–3.8]) and increased risk of post-infective chronic fatigue (relative risk = 4.0 [95% CI 3.5–4.5]) [27]. Finally, the association between these syndromes could derive from symptom overlap. Indeed, there is symptom overlap between IBS and other functional somatic syndromes, including ME/CFS and fibromyalgia syndrome [5]. IBS patients also have higher scores on the Fatigue Impact Scale than healthy individuals [28, 29].
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Indeed, there is symptom overlap between IBS and other functional somatic syndromes, including ME/CFS and fibromyalgia syndrome

Big, big red flag.

Your friends aren't always who you think they are.
 
Has anyone contacted them about this?

Give Lipkin/Hornig a chance to respond and if not then maybe time to change the signature about donating to Prof Lipkin @AndyPR?
Lol, not a chance. I no more believe that Lipkin and Hornig have a grand scheme to try to prove ME as psychological than I believe that Wessely is going to hold his hands up and admit that he was wrong along, ME is purely biological, and write a personal cheque to all those who have been harmed.

Look at the quote. It's in a paragraph discussing causality, and is one of three possibilities they suggest. Look at the definition of functional somatic syndromes;
Wikipedia said:
Functional somatic syndrome is a term used to refer to physical symptoms that are poorly explained. It encompass disorders such as chronic fatigue syndrome, fibromyalgia, chronic widespread pain, temporomandibular disorder, irritable bowel syndrome,[1] lower back pain, tension headache, atypical face pain, non-cardiac chest pain, insomnia, palpitation, dyspepsia, and dizziness.
Now we are used to seeing it used by psychs as an official sounding way to say "it's all in your head" but CII will be using it as it's defined "physical symptoms that are poorly explained". That, like it or not, is where we are with ME and why we need research.

Is it, from a patients point of view, a poor choice of a term. Yes, absolutely, and CII have been somewhat naive in using it, but if their goal was to push a psych agenda then they wouldn't have limited themselves to such a small section of the paper to do it in such a poor way, and they wouldn't be relying on crowdfunding to get their research projects running. But ultimately, if you want to blame anyone, blame the BPS psychs for hijacking what was previously a scientifically neutral term.
 

Cinders66

Senior Member
Messages
494

Can someone explain what the symptom overlap is with IBS and CFS. Yes some with CFS have IBS , some with CFS also have migraines, some also have pain, some flu symptoms like auto immune illness, some also have neuropathy etc etc. Why this big connection right back from Wessely with CFS and IBS as symptom overlap, as in the 2 are almost interchangeable, when they're so different in my view. It says IBS have a higher fatigue score (none of the healthies I know who have IBS have fatigue) but I guess we aren't talking cant work or socialise fatigue so is it comparable to or really relevant to CFS? I don't understand why the 2 are lumped connected under MUS.